Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Adam Kegley  00:08

Welcome to From Hair to There, a podcast about alopecia where we bridge the gap between patients, healthcare professionals and you, our listeners. We bring you diverse alopecia areata stories from around the world highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey. Hair loss isn’t just physical; it’s emotional, mental, and even spiritual, and we’re here to discuss it all. I’m Adam Kegley, Manager of Global Partnerships at Global Healthy Living Foundation and your co-host for this episode. Today I’m excited to introduce my fellow co-host, Supriya Surender. She is someone who doesn’t just speak about alopecia areata, she lives it and is a fierce Patient Advocate.

Supriya Surender  00:57

Thank you, Adam. It’s been quite the journey for me as an alopecia areata patient advocate, and I’m here to share it all. I believe that every alopecia areata patient has a unique story and by sharing ours we can inspire, motivate and uplift each other. Whether you’re an alopecia areata patient, a caregiver, a medical professional, or someone just wanting to learn this podcast is for you.

Adam Kegley  01:21

So tune in and let’s embark on this journey, from hair to there.

Adam Kegley  01:31

We are kicking off this inaugural season of From Hair to There with three episodes highlighting experiences in Canada. Supriya would you like to introduce our guests?

Supriya Surender  01:41

Of course. We have two wonderful guests with us today. Dr. Cathryn Sibbald dermatologist in Toronto, Ontario, Canada, and Anthony Gilding, Alopecia Areata patient advocate in Toronto, Ontario, Canada. Why don’t we start with each of you telling us briefly why you’re looking forward to being with us on today’s episode. Let’s start with you, Dr. Sibbald.

Dr. Sibbald  02:02

Thank you so much Supriya and thank you for inviting me to this podcast today. So as you mentioned, my name is Dr. Sibbald. I’m a dermatologist practicing in Toronto. I graduated about five years ago from the dermatology program here and then I did a one year pediatric dermatology fellowship in Philadelphia, with a hair guru there Leslie Castelo-Soccio, who does a lot of work in alopecia areata. So right now I see about 80% pediatric patients and 20% adults and I do have a monthly alopecia areata clinic at SickKids, the hospital where I work, mostly. This has become an area that I’m very interested in and I’m very excited about some of the upcoming advances in treatments and investigations that have been going on in this field.

Supriya Surender  02:51

Thank you so much. And now you, Anthony.

Anthony G.  02:53

Yeah, so hi everyone, I’m Anthony, as you said. I’m very excited to be here because as you mentioned, sharing stories can really inspire people and it shows people that they’re not alone. And this is something that I wish I would have had when I was first diagnosed. So I’m looking forward to sharing my story and hopefully inspiring others.

Adam Kegley  03:12

Thank you so much, Anthony. And I think to kick us off with our first round of questions, I think I’d pass it over to you, Dr. Sibbald. And the first burning question I think we all have is can you explain to us what alopecia areata is and how it’s diagnosed?

Dr. Sibbald  03:28

For sure. And I’m glad that you started off with that because I think there can be confusion still with classification of alopecia areata. So alopecia as we all know is just hair loss but alopecia areata specifically refers to a condition in which your immune system is attacking the hair follicle and leading to hair loss and it can present either patchy or full hair loss and we actually subtype alopecia areata so you may have heard of terms such as alopecia totalis or alopecia universalis. It is all under the umbrella of alopecia areata. The ‘totalis’ is when it affects the entire head in face. And then ‘universalis’ is when it also affects body hair. How we diagnose it is also something that’s very important to go over because this is really a clinical diagnosis, meaning that there is no test that you can do that sort of bings and says yes, you have alopecia areata. We take the history of how it started, what other things were going on at the same time, family history of similar conditions, and we put that together with what we see on our clinical exam, so what a patient is demonstrating and together that makes the diagnosis. And in that process, in our minds, we are sort of excluding some other potential mimickers of alopecia areata.

Adam Kegley  04:52

Thanks so much for that. Dr. sibbald.

Supriya Surender  04:54

I think it’s so important to have that clarification. I know a lot of times people will come to me on Instagram and message me and say I don’t understand why this is happening, all my bloodwork is normal, and it’s unfortunately not as simple as a bloodwork panel. So thank you so much for adding that clarification. Anthony, did your diagnosis follow a similar path to what Dr. Sibbald described? I asked because I know for some patients, it’s not always quite as linear and sometimes it can be more of a squiggly line per se before one ultimately gets their diagnosis. So would you mind sharing a little bit about your journey to getting an official alopecia areata diagnosis?

Anthony G.  05:36

Sure. So when I was about seven years old, we noticed a couple of small bald spots on the side of my head. So this was back in 2006. And we went to my family physician and he said, this is alopecia areata. He gave me a corticosteroid cream. I used it, the hair grew back, and I had hair for seven years. And then when I was 14, it came back. And at that time, because it had been so long, and I was so young, when I first had it, I actually didn’t know what it was. I forgot that I had alopecia when I was seven. So we went to my family physician again, and they said, yep, this is alopecia areata. They gave me the corticosteroid cream again, and this time, it wasn’t working. The hair wasn’t coming back. And so they made the decision to refer me to dermatology, which took a few months to be seen. And when I was seen, they confirmed that it was alopecia areata. So it was a little bit squiggly, I guess, just waiting to get that confirmation because my family physician was pretty confident that that’s what it was. But they acknowledged that they’re not the specialists so they don’t want to give a definitive answer. But once I saw dermatology then I did get that confirmed diagnosis.

Supriya Surender  06:55

Thank you for sharing that. And looking back on your diagnosis journey, is there anything you wish you would have been told when you received your diagnosis either for a dermatologic perspective, or even a mental health or wellness perspective?

Anthony G.  07:09

Absolutely. So yes to both. I wish that I would have been told about the unpredictability of alopecia areata because I was kind of under the impression that the hair loss that they had at the time was the only hair loss that I was going to have. And that that hair would grow back with some sort of treatment. Myself and my family, we actually weren’t aware that it could get worse. So when it did get worse for me, it was very traumatizing because I wasn’t expecting it. And from a mental health perspective, I wish that I would have been given the resources like mental health support earlier, because I think it hit me really, really hard when the hair loss became more extensive. I actually kind of went into reclusion and didn’t go to school, didn’t go anywhere for almost two years. And as you can imagine, that took very intensive mental health care to kind of get me out of that. And so I wish that I had been given access to those resources earlier so that I could have taken a bit of a more proactive approach with the hope of maybe not struggling as much as I did.

Supriya Surender  08:14

Thank you so much for sharing that. We always say the most predictable thing about alopecia areata is that it’s so unpredictable. And you know, it really takes us on a whirlwind of a journey.

Adam Kegley  08:25

Totally agree. Supriya, and thanks so much for that Anthony. I think you bring up something a lot of patients feel are missing. And that’s resources and trusted sources of information. And that’s really the beauty of something like this podcast and patient organizations like ours, and also like the Canadian Alopecia Areata Foundation that offers resources from everything from support groups, educational materials, and lots more to really help Canadians with alopecia live their best lives. And further to what we just discussed, I think we wanted to talk a little bit more about treatment availability for patients. And I know it varies widely based on where patients may live and that’s certainly no different in Canada. Dr. Sibbald, I wanted to ask you where Canada is at with approvals for treatments, especially new treatment options, you know. What might be on the horizon?

Dr. Sibbald  09:17

Yeah, so thank you for that question. And I think it’s a very exciting time in terms of new treatments that are rolling out into the market. Most people will be aware of baricitinib which is a Janus kinase inhibitor, which is basically a pill that you take on a daily basis to target the inflammation that’s destroying the hair follicle. So that is a medication that has currently been approved in the United States for patients who are 18 years and up and we expect that to come to Canada. I can’t give you an exact timeline but hopefully in the next year or so. Another treatment actually that’s been studied and shown efficacy in 12 years and up is is another Janus kinase inhibitor called ritlecitinib and that as well is likely going to come to Canada in the next couple of months. So very exciting.

Adam Kegley  10:09

Very exciting indeed. And actually, I’d just add that since this recording ritlecitinib has been approved by Health Canada for the population you mentioned, Dr. Sibbald. It’s certainly a new horizon in terms of opportunities for patients. Back to you, Anthony!

Anthony G.  10:24

So Dr. Sibbald, we know that you are quite involved in clinical studies here in Canada right now. And I was just wondering if you can share a bit about what you’re doing and what your hope is for the outcomes.

Dr. Sibbald  10:36

For sure. These are studies that are quite dear to my heart. So there’s one that’s a little bit more sciency that I’m doing right now, and one that’s more focused on mental health. So the first one would be a biomarker study. And so what we’re doing is we’re testing the blood of people who have alopecia areata, and we’re separating those people out into whether they have eczema or not. And then we’re comparing them to people who have neither condition, so no inflammatory condition, and no hair loss, no eczema. And we’re seeing if there are any markers in the blood that could number one tell us like what’s different about people with hair loss to help us inform treatment. And then could we use those, you know, if there’s things that are higher in the blood to monitor treatment response, or side effects, or target those things that are up in the blood, which we assume are contributing to the condition. So that’s one study, it’s actually done, and we’re just working through the analysis right now. The other study is even more close to my heart in terms of something that I feel passionate about and I think we’ve already mentioned it. But it’s that mental health piece that is so prevalent in patients with hair loss. And so what we’re doing is looking at a variety of different things that can happen to people who have hair loss, one of them is bullying. So we’re doing a bullying survey of our patients. We’re looking at insomnia, so problems falling asleep. And we’re also looking at anxiety and Anthony actually helped me a lot with a study that we did across Canada, that was given to people who have alopecia, and really showed that many people struggle with anxiety, even more so than depression, although both are prevalent. And so one part of this study that I’m doing is getting those questionnaires and finding out how common it is. But another part is actually trying out a little bit of a mindfulness app that you do every day that takes less than five minutes to see if targeting anxiety will help both the alopecia itself and the anxiety that’s associated with it. So I think those would be my two big projects, and both exciting for me.

Adam Kegley  12:47

Incredibly exciting. Thank you so much for sharing that. Dr. Sibbald, I think that brings some hope and lots of different aspects actually, for patients, I’d imagine.

Dr. Sibbald  12:55

For sure. And on a related note, maybe I’ll ask Anthony a question. Because I know that you’re studying for your master’s right now and you hope to become a dermatologist as well as you’re very active in alopecia related research with myself and others. So what has this experience been like for you, especially given that you experienced the condition that you’re interested in studying?

Anthony G.  13:18

Yeah, it’s really interesting, because when I was 14 years old, and diagnosed again, I never would have imagined that one day, I would be researching the same condition that I at the time felt like I was falling victim to. And so I really feel like I’ve taken my power back. And I’m using this experience to make lives better for everyone else. And I’ve always wanted to be a physician, but I didn’t quite know what area I wanted to go into. And then having alopecia showed me the need for dedicated dermatologists to focus on this area. And as far as the research goes, it’s been incredibly exciting. And you know, I have to just take a moment and really thank you, Dr. Sibbald, for getting me involved and giving me the opportunity to conduct alopecia areata research firsthand. And because of that experience, I’m now doing so much more. So thank you for that.

Adam Kegley  14:09

It’s so interesting. Anthony, what you said on another note, you know, Supriya and I have talked to several different patients now. And what you’d said really struck a chord with me. And it made me think of the next question that I had for Dr. Sibbald to actually which is about the differences between male and female patients. And I was wondering if you actually notice specific differences in terms of how they might approach their condition or management of it?

Dr. Sibbald  14:33

It’s a very interesting question. And I think my answer maybe five or 10 years ago would have been quite different. I think there are still many cultures that clearly differentiate males from females, but I think we’re lucky in Canada that there’s much more of a melting pot of female and male roles and also many patients who are identifying as opposite genders these days. One of the things that I definitely need to consider with my clinical cap on is pregnancy potential. And so that will affect safety of medications when I’m talking to patients. I think more so than you know, the availability of wigs being different for males versus females and you know, maybe beard loss being something that males are more concerned about would be the eyebrow loss because over and over again, and this is obviously both males and females, it’s the loss of eyebrows that sort of helped to define the face that I feel has quite a big impact on people. That being said, I also, on that note, have learned that everyone is different. You can’t assume that someone doesn’t like their eyebrows or likes their eyebrows, or you know how they feel. So I think actually, the most important thing is asking the person who’s in front of you, the patient who’s suffering from hair loss, how it’s affecting them, what matters to them, if they have hair growth, does it matter more for eyelashes, does it matter more for scalp and having that dialogue between the two of us.

Supriya Surender  16:01

Thank you so much. I remember for me, I lost my eyebrows at age 33. And I think that was so much harder than losing the hair on my head. I had no idea how much my eyebrows that I had had for almost three decades or a little over defined my face until they were gone. So I completely relate to that sentiment. Anthony to build on what Dr. Sibbald mentioned, I’m curious to hear your perspective as a male living with alopecia areata. I think in Canada and the US and honestly, globally, there’s this misconception that alopecia is quote unquote “easier” for males, because society tends to consider a man losing their hair more acceptable than a woman losing their hair. Personally, I think that’s a really unfair assumption, because it invalidates how jarring and emotional alopecia areata can be for men, too. So with that, could you tell us a little bit more about your experience as a male living with alopecia areata and how you’ve coped with losing a piece of your physical identity?

Anthony G.  17:03

Yeah, I think that you’ve hit the nail right on the head. I think that society kind of normalizes any extent of baldness for men. And so when a man loses his hair, it’s not looked at as a big deal. And so for me, everybody around me was kind of saying, oh, you know, lots of men are bald, you shouldn’t worry about it; you’re fine. And some people were saying it to try and comfort me, but I would actually argue that it was doing the opposite. Because as you said, it really was invalidating my feelings. And it was making me feel like I was overreacting almost. But in reality, I really, really struggled. And, as Dr. Sibbald mentioned, for me, especially, losing my eyebrows was the most difficult part. And I would always say to people, okay, yes, there are lots of men who are bald, but how many men do you see with no eyebrows? And so often when I said that, then they wouldn’t have anything else to say. And yeah, I think for me, how I coped was, it was really having the support of my family and my friends, and especially my dermatologist at the time. She was incredibly helpful. And mental health care especially was kind of what I needed to get me out of that reclusion that I mentioned earlier. And so my advice to anybody who, especially men with alopecia areata, is to seek that mental health care early. There’s a lot of stigma associated with getting mental health care, but it really does help and there’s nothing wrong with getting it.

Supriya Surender  18:29

I love that. Thank you for sharing that. I think that’s so important. The one thing I always say is that even though it’s hair, so many people minimize it and try to make it feel like your emotions involved with it aren’t important because outsiders looking in just consider it a physical aspect of you, but us that have gone through this journey really understand the emotional aspect, and anybody that’s struggling, just know that your emotions are valid. Anything that you’re feeling is important, and you really deserve to be able to prioritize taking care of that aspect of yourself.

Adam Kegley  19:06

I couldn’t agree more Supriya. I think Anthony really hit the nail on the head, so to speak, and the connection to mental well being and the effects that alopecia areata has on someone’s mental and emotional well being, it’s something that I think has come up a lot already in this episode. And it just speaks to the inherent connection of someone living with the condition and also their mental and emotional health. And it’s something that we also dive into in detail in a future episode, actually, with a clinical psychologist, Dr. Laurie Ferguson and other patient guests. So we’re really excited about that. But I think to build on what Anthony was saying, and I think it’s really, really important in regards to how a provider may approach this situation as well, because it’s such a sensitive topic and I was wondering if you Dr. Sibbald, a question for you would be how do you ensure patients you know, psychologic safety and kind of mental and emotional well being? Kind of curate a safe environment for them to speak about what’s going on and be willing to hear about options maybe for treatment or to help them just confidently make a decision so they feel comfortable in whatever decision they make, you know, whether that’s treatment or something else?

Dr. Sibbald  20:16

For sure. Thank you for that question. I am still working on this myself. And so I don’t have the perfect answer. But one of the things I really like about having a specialty clinic is it allows me to see what I see in that clinic is just patients who are newly diagnosed to me and it gives me a little bit more time. We have a dedicated social worker who’s in that clinic. And so for every single patient, we discuss it as a group, and we go in there, and I’m very cognizant of normalizing the anxiety that I think is present in every single patient that I see. And so I put that up front. And you know, the struggle with children as well is that it affects the whole family unit. And so there’s parental anxiety and consequences as well. And so addressing both of those upfront, and then making it very clear that number one, I want to make sure that we address that mental health piece and that’s why the social worker is there. And then she stays back and speaks with them a little bit more about resources available to help with the mental health piece. And then also to make sure that they’re aware that I’m there as their clinician to help, you know, confirm the diagnosis to make sure that they’re healthy, that they don’t need something reversed or prescribed. But in terms of the treatment, I want to work with them. If they are happy, not trying creams or pills to get their hair back, that’s fine with me, I don’t have a strong like motivation to put everyone on a medication. My goal is really to help them through this journey in whatever way I can. And I hope that that resonates. We also, you know, if they want to think about things, we’ll give patients resources and written materials to think about decisions before they make them. But as I said, it’s an ever learning journey for me as well to improve the care that I provide.

Supriya Surender  22:06

Dr. Sibbald, I know you said you’re still working on it but I feel like you’re doing an amazing job, because I think you’re the first dermatologist I’ve ever heard of who’s including a social worker from the jump. And that is such a huge step to take to prioritize the mental aspect of things. And then also the fact that you’re considering treatment and option not a must. That’s – both of those things make you an incredible doctor. So thank you for what you’re doing to prioritize this community.

Adam Kegley  22:38

Dr. Sibbald, as a follow up to that with what you mentioned, you know, what kind of factors should come into play when deciding whether or not to treat alopecia and go on a treatment? What what do you consider in that?

Dr. Sibbald  22:50

So it’s always a very careful discussion about the side effects and the benefits. So, you know, there are side effects from any treatment that you take, whether that’s something that you’re putting on the scalp that could cause irritation. All of these Janus kinase inhibitors do have some side effects, and many of them are rare. But that’s a discussion that we definitely need to consider when we’re thinking about, right now, a medication that you probably need to take long term and because of that fact that we’re seeing when you stop medications, the hair falls out. So I think there’s many different factors, which is why I think it must be like a joint decision between the patient and the clinician prescribing to understand that whole puzzle of side effects, benefits, what to expect.

Adam Kegley  23:35

Thanks for that.

Supriya Surender  23:36

Anthony, with all that we’ve discussed in mind. What do you think has been the biggest impact alopecia areata has had on you? And how have you overcome any hurdles that you’ve experienced throughout your hair loss journey?

Anthony G.  23:48

So I think for me growing up, I was always a little bit shy. But once I developed alopecia areata, it really hindered my ability to present myself in public, I was very nervous about how people would perceive me, and you know, what they would say about me. And I think that was the biggest impact was just my ability to kind of socialize with others and to live my life, essentially. And while mental health care certainly was pivotal in me rising above that, I think the other thing that kind of it was a little bit of a revelation that I had, I just realized that, you know, as difficult as this is, life is going to continue whether I want it to or not. And so I can choose to be a victim and kind of wallow in my sadness, or I can do something about it. So getting that mental health care was the first step but I think a lot of introspection and figuring out who I was as a person and realizing that alopecia doesn’t have to stop me from being the human being that I want to be and doing what I want to do. And so that realization allowed me to slowly but surely get back into living my life. Although I finished my high school diploma from home, I did finish. And I went to university which, when I was first diagnosed, I didn’t think I’d be able to do, but I did it and I graduated and now I’m doing my masters and one day medical school. So I think just realizing that you can be whoever you want to be irrespective of alopecia areata; it doesn’t have to be the thing that stops you. And in my case, it’s the thing that actually motivates me to keep going.

Adam Kegley  25:30

It’s such an incredible response. I think it perfectly encapsulates everything that we’ve discussed today actually is about not letting the condition stop you from doing and being who you are and pursuing that to the fullest and I think you know, in that regard as we come to a close with our two wonderful guests here I’d just ask Dr. Sibbald a last question is what is one word or phrase of advice you would want our listeners and fellow alopecia areata patients in Canada and around the world to remember?

Dr. Sibbald  26:04

That is such a hard question to answer. I’ll definitely go with a phrase and I would say that you know, unfortunately, it’s never a good thing to be diagnosed with a condition but if you’re going to be diagnosed with alopecia areata now is a good time. It is exciting in terms of treatment options, but also that concept of if you don’t want your hair to regrow, it’s also an exciting time because we’re recognizing more and more how we can live with the disease and not just have it affect us, as Anthony so beautifully said.

Adam Kegley  26:34

Such a great response. Thanks for that.

Supriya Surender  26:36

Anthony same question for you: What would be your one word or phrase of advice our listeners and alopecia areata patients should keep in mind?

Anthony G.  26:45

Yeah, I know you said one word but it’s kind of a two parter. So the first I would just reiterate what I said about alopecia areata. It doesn’t have to be the thing that stops your life. You can be whoever you want to be, you can do whatever you want to do with or without hair. And then the second piece would be that you’re not alone. I think alopecia areata, when you’re first diagnosed, you feel incredibly alone, because it’s not something that we see too often in public. But do know that you’re not alone. There are resources out there for you. And even though you may not see that many people with alopecia areata, there are plenty of us. And so you don’t have to be alone in this journey.

Supriya Surender  27:23

Thank you, as I hear your story throughout this entire podcast, I think about when people say life can either happen to you or for you. And it seems to me for you, you said okay, alopecia areata happened to me but now I’m going to make it happen for me. And you’ve really taken the control back, you’ve become a force in this space, and you’re on the forefront of changing the landscape for the options available to the community. And that’s truly incredible. I’m really proud of you and proud to know you and honored to have been able to connect with you on this podcast.

Anthony G.  27:59

Thank you so much.

Supriya Surender  28:00

Thank you so much, Dr. Sibbald and Anthony for joining us today. It was truly an incredible episode and so much valuable information to share with the community. We really appreciate your time and I just can’t wait to share this with the world.

Dr. Sibbald  28:13

Thank you so much for having us and for all your work in this area as well. I think the podcast is a great option to reach out to patients.

Anthony G.  28:22

Yes, thank you. It’s really been an honor and a pleasure to be here today with all of you.

Adam Kegley  28:26

And I can only second what Supriya said thank you both so very much for joining us. And I’d actually like to ask Supriya as a very last question of the episode which would be your takeaway: what is your takeaway from today?

Supriya Surender  28:38

Yes, I’ve been taking notes this entire episode as well and so many things. I think my biggest takeaway is one how exciting it is to see the landscape of alopecia areata change. I know when I was diagnosed in 2015, everything just felt so hopeless. Nothing had been approved yet; everything was up in the air. And so I felt like there were no options available to me and hearing Dr. Sibbald talk, it’s so exciting to know that when somebody gets their diagnosis now that their options are viable and exciting, and there’s a lot more choice involved in what the future of alopecia areata looks like. So it warms my heart and makes me pumped to see what’s going to happen in the next 5, 10, 15 years. I can’t even imagine, but I love it. And just to reiterate what I said about Anthony, I just felt very inspired by everything he said and I love that he took this condition that happened to him and has made a career out of it and is now the voice of our community and helping change what happens for us in the future. And that to me is just so amazing.

Adam Kegley  29:48

And that brings us to the end of this episode of From Hair to There: A Podcast about Alopecia. This podcast was made possible with support from Pfizer Canada. We hope the stories, insights, and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Supriya Surender  30:05

Living with alopecia areata is more than just hair. It’s about resilience, identity and community. And together we’re building that community one story at a time. If our words resonated with you, please take a moment to rate us, leave us a glowing review, and share this podcast with your friends, family, and networks. Every share amplifies our voice and help someone out there feel understood. And if you have any questions, comments or episode topic ideas, you can email us at [email protected].

Adam Kegley  30:38

And remember: whether you’re on the path of acceptance, seeking treatments, or anywhere in between, we’re with you from hair to there.

Narrator  30:50

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Adam Kegley  00:08

Welcome to From Hair to There: A Podcast about Alopecia, where we bridge the gap between patients, healthcare professionals and you our listeners, we bring you diverse alopecia areata stories from around the world highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey. Hair loss isn’t just physical; it’s emotional, mental, and even spiritual. And we’re here to discuss it all. I’m Adam Kegley, Manager of Global Partnerships at Global Healthy Living Foundation and your co- host for this episode. Today I’m excited to introduce my fellow co host, Supriya Surender. She is someone who doesn’t just speak about alopecia areata, she lives it and is a fierce Patient Advocate.

Supriya Surender  00:57

Thank you, Adam. It’s been quite the journey for me as an alopecia areata patient advocate, and I’m here to share it all. I believe that every alopecia areata patient has a unique story and by sharing ours we can inspire, motivate, and uplift each other. Whether you’re an alopecia areata patient, a caregiver, a medical professional, or someone just wanting to learn, this podcast is for you.

Adam Kegley  01:21

So tune in and let’s embark on this journey from hair to there.

Adam Kegley  01:31

We have a full house today with four wonderful guests joining us to talk about the many aspects of alopecia areata that make it more than lost hair, including three wonderful ladies living with alopecia working with the Canadian Alopecia Areata Foundation or CANAAF, who are also patient advocates. That would be Sara Teskey, Christal Malcolm and Lauryn Harrison, as well as Dr. Laurie Ferguson, clinical psychologist.

Supriya Surender  01:58

We have a lot of ground to cover and an incredible crew to cover it with. So let’s dig in and kick things off! Why don’t we start by each of you telling us who you are: name, location and how long ago you were diagnosed and giving us one line about why you’re excited to talk about why alopecia areata is more than just lost hair. Let’s start with Sara. Welcome!

Sara T.  02:20

Thanks, Supriya. Thanks, Adam. It’s wonderful to be here. So I was diagnosed with alopecia areata when I was six years old. And I’m 27 now and I grew up in a small town just north of Toronto. And just like most places, alopecia wasn’t well known. And I’m really excited to be here and having this conversation with you all today. Because when someone sees alopecia, they may think a lot of things, but they may not think about what that person is going through inside. So thank you so much for bringing out this topic so that we can have an open discussion about it. It’s really important for people to be aware of the toll alopecia can take on someone’s mental health.

Supriya Surender  02:56

Thank you. And now Christal.

Christal M.  02:58

Hi everyone, pleasure to be here. So I was diagnosed with a form of scarring alopecia approximately about 20 years ago. It’s been quite a roller coaster. I’m born and raised in Scarborough, Ontario all my life. And I’m really excited to have this conversation because I feel like there’s so many assumptions surrounding hair loss. And I think this conversation is an excellent way to debunk the myths versus facts. And I hope that this conversation also inspires people and motivates people that you know that they’re not alone in any of this. And I know that alopecia can be very isolating, but I’m hoping through this conversation with all of you that your listeners will find some hope beyond the strands.

Supriya Surender  03:39

Thank you. I’m certain they will find some help with this incredible crew of alopecia areata warriors here. And how about you, Lauryn?

Lauryn H.  03:47

Well, it’s amazing to be here tonight. And I’m tuning in from Burlington, Ontario, which is where I was born and raised. It’s a small town just outside of Toronto, and I was diagnosed with alopecia areata when I was three years old. It waxed and waned and then progressed to alopecia universalis when I was 13, and 10 years later, I’m still rocking the bald. What really excites me about tonight is that it contributes to prospective conversations like this. And I’m a big believer that when you change the way you look at things, the things that you look at change. So having a conversation that sort of challenges the preconceptions around alopecia, I think that contributes to this idea, and hopefully, people leave the conversation feeling empowered and engaged and motivated.

Adam Kegley  04:34

Thank you all so much. And how about you Dr. Ferguson?

Dr. Ferguson  04:37

I don’t have alopecia. And I’m eager to learn more about how these warriors who are indeed rocking the bald all of them deal with all of the challenges and particularly the mental health challenges that come along with it. I think that may be one of the most under thought about or least thought about issues that comes along. And yet I think as I’ve experienced this talking to patients, it’s a front-and-center problem all the time.

Supriya Surender  05:07

Before we fully jump into the topic, I wanted to set the stage a bit and talk about the societal views of hair loss. I know in the US, it doesn’t matter what show you’re watching, or movie or book, bald always ends up being portrayed as either an illness, a villain, a monster, and that can really impact people’s perception of hair loss when they see it in person, either on themselves or on others. I’m curious for you in Canada or even local to your province, what are the societal views like and have those had a positive or negative impact on your hair loss journeys? Lauryn, I’ll start with you this time.

Lauryn H.  05:44

I would say that representation is a really tricky subject with alopecia because we know that, broadly, as you say, on the screen, a bald villain might be really popular or even in terms of health. Sometimes hairlessness is associated with cancer or other disease. So I do find that where we are Canadian wide, I guess, there is sort of a negative connotation around hair loss or baldness specifically, and I think it’s something that we continue to try to raise awareness in order to counteract.

Supriya Surender  06:16

Thank you. And Sara, how about you?

Sara T.  06:19

Yes, I don’t think these kinds of perspectives about alopecia end at the US border. Alopecia is uncommon everywhere in the world. And because it’s so uncommon, there’s not enough education around what it actually is and how it affects someone. Alopecia isn’t well represented in media. And when it is, it’s often in a negative or a very manufactured way, like you’ve described like, you know, if someone who’s bald is playing the villain, right? And in everyday life, common things we hear are people assuming that we’re sick or contagious because we have no hair, even employers refusing to hire someone because they believe it will in some way impact their quality of work or the overall workplace environment. For alopecia areata specifically, which is an autoimmune disease, some of the inaccurate or even insensitive perspectives about it come from it being seen as a cosmetic concern and not a medical one. And because it’s seen as a cosmetic concern, not a lot of funding goes into developing treatments, so options for regrowth are limited. Insurance companies only partially cover the cost of a single wig for a lifetime, which is not enough. And I’m sure the three of us can all say that we’ve had someone whether a family member, a friend or a stranger tell us “Ah, it’s just hair,” not understanding what’s going on beneath all of that. So what really is overlooked are the psychological and psychosocial impacts of alopecia. So you know, the effects of hair loss on someone’s mental and social health and the impacts of alopecia can be severe, causing someone to miss school or work or avoid social activities, which are essential to caring for your mental health. And so while someone else may think it’s no big deal, to us it’s much different. So yes, the way society views hair loss is very surface level; they don’t see beneath the skin, no pun intended.

Supriya Surender  08:08

I couldn’t agree with you more. I think I get a twitch anytime somebody says “It’s just hair.” It’s so much more than that.

Sara T.  08:16

Yes, absolutely.

Supriya Surender  08:17

And Christal, how about you?

Christal M.  08:19

Well, I think Lauren, and Sarah just basically summed up everything that I was gonna say, fantastic job. I just feel like society just doesn’t understand. I feel like looks are so important in today’s world, and it seems to be the focal point for a lot of things like people make assumptions, like Sarah said, based on if they’re going to hire you or not, based on your appearance, not based on your ability or what’s on your resume. So there’s that part and the comment about “It’s just hair,” I think people just assume that we’re being dramatic. Even friends and family are like, oh, you know, you’re still beautiful. You’re still a great person. It’s almost like they’re overlooking what’s happening to us emotionally, physically, psychologically, like, there’s so many layers to it. And I feel like as much as we may have our cheerleaders around us, it’s not enough because they’re talking to somebody who’s losing their hair, but they have a full head of hair. Do you know what I mean? So unless you walk in our shoes, you will have absolutely no idea. So like Sarah was saying, it’s not a US thing. It’s a worldwide thing. And I feel like everyone within the alopecia community can attest that they experienced the same sort of things and assumptions from people.

Supriya Surender  09:26

I couldn’t agree with you more. I’m sure all of you have heard the comment, “Oh, well, at least you have the perfect shaped head for a bald head,” you know?

Christal M.  09:35

I just got that comment on Tuesday!

Sara T.  09:37

Same, I got that last week!

Supriya Surender  09:39

What are you supposed to say back to that?

Adam Kegley  09:41

These are all such good points. And it really makes me think of kind of a similar question to Dr. Ferguson actually is, you know, hearing our guests patients comments, what would you say about how those kinds of societal views can actually impact patients who are really struggling to maybe to be diagnosed first of all, and they don’t know what’s going on, and then also maybe those who are diagnosed but really kind of unsure of where to go from there?

Dr. Ferguson  10:04

Well, I think the idea that there is such a stigma really is what we’re talking about around this and that hair is part of identity. So I think when you are struggling in that way, you’re not sure what your identity is, you know, to get diagnosed, it can be even more difficult. Where do I go? What does this mean? There’s a lot of fear. There’s a lot of worry and anxiety, as guests have already all identified, you know, this whole layer of many, many things. So clearly, the surround for this does not help those who are newly diagnosed or struggling to get diagnosed.

Adam Kegley  10:39

Thanks for that. Dr. Ferguson.

Supriya Surender  10:41

I think every person with alopecia areata hits a pivotal moment when it goes from being just a little hair loss to wow, this is a significant amount of hair loss, and I might lose all of my hair. What was that defining moment like for you and how did your medical support team factor into that? How did they help you? Did you start building a team of providers to support your journey and was a mental health professional an option available to you along the way? I’ll start with you Christal. And I know that was a loaded question. So let me know if you need me to repeat!

Christal M.  11:14

I think my defining moment – and forgive me because I feel like I trauma blocked quite a bit of my experience just because it was so hard to go through. But I do remember my late teens, early 20s, I noticed the top of my head. It was shiny, and I couldn’t understand why. And then I noticed that it started to get very itchy. And then the burning started. And then bleeding started. It was a very bizarre set of circumstances. And I remember I went to my hairdresser and she actually pointed out there’s something going on with the top of your head, like your hair’s thinning, you know. And being in my 20s, I kind of fluffed her off, and she gave me some shampoos, and she suggested that I go see my family doctor, which I didn’t do. And it just progressively got worse and worse and worse to the point where it started to expand. So now I’m trying to be the MacGyver of hair. And I’m doing all kinds of crazy things to try and like cover up these patches, but still trying to figure out why my scalp is bleeding and why the pain is so severe. So that lasted for quite some time. In terms of medical providers, I did see a GP. Actually, no, I’m sorry; it was a dermatologist. And it took months to get that appointment. And when I did get that appointment, it was very dismissive. I had a bunch of questions; none were answered. The dermatologist basically looked at my scalp and said, oh, you’re like the fourth or fifth person I’ve seen today with this. And I’m like, well, what is this? When it was just, well, it’s alopecia. And I’m like, well, what is that? Did I eat something? Was it some sort of medication that I took? Did I rub something – like a tree bark –  like what happened? What is going on? So it was a very quick appointment with little to no answers. I was prescribed a shampoo, a kind of a serum that kind of resembled olive oil, just a little bit thicker. And I think that was to help with the dryness because that was another symptom that I had; my scalp was very, very dry. And I just left there with more questions than answers. And the symptoms just got worse, and so did my anxiety and my depression and questioning my existence, like why is this happening to me when all of my family and friends, my cousins have that gorgeous Rudy Huxtable type hair and I’m dealing with this. It was very, very difficult. In terms of seeing a mental health professional, not at the time; I didn’t see anybody. I think I was just too lost in my feelings and thoughts and I was trying to figure it out on my own. I was doing like a lot of Google searches and things like that to no avail. I was doing a lot of DIY treatments, trying to stimulate the hair growth and also alleviate the symptoms. But it was just a lot of searching on my own trying to figure out what the problem was. So yeah, I didn’t really see, like, a mental health professional during that time.

Supriya Surender  13:49

Thank you so much for sharing that. I don’t know too much about scarring alopecia, but I can’t even imagine having to go through the hair loss alone plus the pain and the itching and the bleeding. That’s just so much to have to go through, so you are incredible.

Christal M.  14:06

Thank you. And I did have the support of my mom, she’s my rock and my ride or die. But it’s hard as a parent to watch your child go through something like this when you can’t help and no matter what she did it just it wasn’t enough because it was beyond my scalp. This was now affecting me mentally. And even though I presented well, meaning I got dressed every day, I did my makeup, I put wigs on, or put a scarf on, I was so broken on the inside.

Supriya Surender  14:31

I get it. How about you, Lauryn?

Lauryn H.  14:33

Yeah, my defining moment came early in the winter of 2014. And I’d already had alopecia areata. But after losing all the hair on my head, I very rapidly started to lose my facial hair as well. And this experience was just distressing for me because you know, the timing felt really cruel. It was actually the morning of my first high school exam that I woke up without any brows or any eyelashes and I looked at my reflection and I just felt so stark, and I couldn’t really recognize myself. It was such a different appearance. And even though my peers would have been more focused on the math exam I hand that morning, I just, I couldn’t really wrap my head around this new identity that I was looking at. To the point of seeking medical support in the journey, I had already been seen by a dermatologist a few years earlier, fortunately, and I was on a course of a few different steroid injections and treatments along that line and that nature. So I started to seek treatment on that path but in terms of mental health support, I really wish – knowing what I know now – that I sought out some regular counseling just to help me support myself in terms of coping with this new identity or this sort of new appearance that I was working with. I think, even though I had some resources in terms of supportive friends and family that told me that I was still beautiful, and I could still live a full and fulfilling life, I didn’t necessarily have the kind of treatment that supports accepting where you are in your journey and coping with a change like this.

Supriya Surender  16:07

And how about you, Sara?

Sara T.  16:08

Yes, so even when I had patchy alopecia areata, so bald patches on my head, my hair was always really thin and light. So when I began to lose it all, it was really obvious. Clumps of hair would come out when my mom would brush it, in the shower, and the bald patches just kept getting wider and wider. And it only took about two to three weeks before every single hair on my body was gone. And that’s called alopecia universalis for anyone who isn’t aware. I don’t remember having any idea that losing all of my hair was possible. So once it started, there was really nothing my doctor or dermatologist could do; we just had to let it happen. And that was super scary, because we didn’t know what was happening at the time. And going through all those fears and anxieties about why it was happening and how to make it stop, you know, those were very overpowering. And even the treatment that I had been on for years – that worked for years – stopped working because I was so young. And because I was so young too, treatments were limited and there weren’t really any other options besides getting a wig. But luckily, around the same time that I got my first wig my mom and dad found CANAAF. It was their way of making sure that I wasn’t alone in this; it was both for me and for them, you know. They could get advice and support from other parents and I could make friends with other kids who lost their hair like I did. So although I didn’t have a mental health professional at that time, I feel like I got a lot of my mental and emotional and social support from CANAAF and the people that I met there. So that was really, really important to me. And yeah, so if you count everyone that I met at CANAAF, I feel like I had a very big team at my side. So that was really helpful for me.

Supriya Surender  17:51

That’s incredible. I’m glad they were there for you.

Adam Kegley  17:53

Yes, thank you all so much. And I completely agree with Supriya. It really does sound like all of you are stressing how important that support from others can be especially during a pivotal, defining moment in your hair loss journeys.

Dr. Ferguson  18:07

And Adam, if I could jump in here, one of the things I’m hearing so clearly from all of the participants, it just underscores the point of this podcast, that it’s more than hair loss. First of all, there’s serious illness here that gets overlooked when it gets minimized to “Oh, it’s just hair.” And it’s the minimizing of what it means to a person about what their appearance is, especially in such a visual culture. So I think we’ve really heard firsthand how dramatically it is so much more than hair loss.

Adam Kegley  18:38

I couldn’t agree more Dr. Ferguson. I think everyone has made such great points. And I think one of the things too, that came up for me is that there may be a lot of people who are in your corner and supporting you fully. But there might be some people who might say offhanded comments, might mean well, but say the wrong things. And I was wondering if you could answer something about that, which would be: how do you actually set healthy boundaries with people, you know, when you might be losing your hair and to tell people how you want to be treated? Everyone really has an opinion on a lot of things and especially when somebody’s hair starts falling out? How might setting healthy boundaries, how might that improve things?

Dr. Ferguson  19:20

Well, I think our guests here are gonna have some great answers to that very important question. And I would imagine that for those who are listening in, some of whom are just starting to experience this and just starting to experience those unwanted comments, what I often say to my clients who are struggling with these things is: we can have a couple responses. And I encourage them to practice these before they get surprised in the moment. One of them is you know, to just look at somebody and say Did you mean to be so personal or Did you mean to be intrusive, we don’t really know each other. I mean just to really kind of give it back in that way. If it’s a person that closer to you that is offering, a family member or a friend that’s constantly offering advice, one of the things I’d say is you can say very kindly, You know, that’s just not helpful to me. That’s not really helpful when you say that. And to be honest, and that’s where the clear transparency is where you have to help someone or train people, as you said, Adam, how to treat you. And finally, if those don’t feel possible for you, one of the best is sort of the basic, just silence. When someone says something, you just look at them, and you just don’t respond. The point here is to get your power back, to not feel like you’ve been intruded upon by somebody’s even well meaning comment but nonetheless, it’s intrusive and rude. And so how do you get your power back? But for most of us, where we are not trained to respond in the moment, particularly, and so I really encourage people, once you get past the sort of beginning where you’re sort of in shock and surprised yourself at what’s happening, let alone responding to others, when you realize you’re going to keep running into this or people are going to keep commenting, to practice with a trusted person, what some of those comments are. You know, as you said, Supriya you know, wow, at least you have a beautifully shaped head. That would be for me when where we’d go silent and just look at them. But each of you will practice in your own way.

Adam Kegley  21:19

Thank you so much. Dr. Ferguson, I think that says volumes actually, silence, that is.

Dr. Ferguson  21:24

So Lauryn and Christal and Sara and Supriya what has been your experience with setting those healthy boundaries with people who have opinions – welcome are not – about your hair loss? But what have you said, or what have you found helpful in those situations?

Lauryn H.  21:39

Personally, I find that majority of the time, even if I really don’t want to talk about it, it’s a hard pill to swallow that we do want to acknowledge alopecia in order to spread awareness and in order to feel empowered and confident in our skin. So what I’ve found helpful is trying to set the tone by speaking about it with clarity, and really trying to summon some confidence and courage even though it feels really tough. And just trusting that if I’m emitting an energy that’s positive and accepting, hopefully others will sort of match that energy in the best way that they can.

Dr. Ferguson  22:12

Thank you, Lauryn, that’s just such a gracious and lovely response. Christal, what about you?

Christal M.  22:18

I think for me, I’ve had alopecia for over 20 years now I think I’ve come into myself to the point where I just take a direct approach. When it comes to setting boundaries, I’m just very direct. And sometimes I try to extend grace. But I really depends on my bandwidth, because at the end of the day, someone’s choosing to make a comment to me and be somewhat intrusive in my space. So I have to kind of set the tone on how I’m going to respond. And that really just depends on the situation. It’s a day to day thing. So for me, for the most part, it just depends on the situation, it depends on how the person is asking the questions like Lauryn, you know, you want to take an opportunity to educate and spread awareness. But at the same time, I do have a bit of what we call in the community “explanation fatigue,” because it does get exhausting. Because I don’t always want to talk about my hair loss because I’m so much more than my hair. Do you know what I mean? So sometimes I’m just not in the mood. And there are times when I’m more than happy to answer questions. But I just feel like it’s one of those things where I just have to take it depending on how the situation is and not getting offended easily because I used to get really offended before and now I just learned to just take it with grace. And sometimes you do have to bite your tongue. Sometimes I do have elevator pitches in my mind, depending on where I’m going, Okay, if somebody says this, to me, this is what I’m going to say. But then of course, when the situation happens, all the elevator pitches are out the door and you don’t remember anything that you thought of! But I think for the most part, people are curious; some people just have no filter or social cues. And I think it’s just depending on how I choose to, like Lauryn said, exude that energy that will kind of convey the direction of the conversation. So for me, it’s a direct approach. And I just say what I think and think what I say so…

Dr. Ferguson  24:05

And Christal, you know, you really bring up such a great point that it’s going to sometimes depend on the day how you respond, not just the person but your own bandwidth. And you bring so much confidence to that.

Christal M.  24:16

Thank you.

Dr. Ferguson  24:16

Sara, what about you?

Sara T.  24:18

For me as I am now, I’m comfortable with the way I look, so it’s really just a matter of letting people know that. When someone tries to tell me how I can cure my hair loss overnight or to try rubbing coconut oil all over my head, I politely say I appreciate your concern, but I’m happy with the way I look. Or I might say something like Dr. Ferguson: I appreciate your concern but saying that is not helpful to me. Here’s what you can say to be supportive. I was able to better set boundaries when I took the time to understand why people have opinions about my alopecia. When a person sees someone with no hair, their brain instinctively registers that something is wrong. It’s unnatural and it needs fixing. So they will offer you their opinions and remedies because they assume that you also see your hair loss as something that needs fixing, but I don’t believe I need fixing. So it’s important to me that I tell others that so that next time when they see someone with alopecia, they may stop and think if what they’re about to say will be kind and mindful, or perpetuate a broken narrative about people with alopecia. So I really think what’s most important is you just be honest with yourself and honest with the other person and that will allow you to set healthy boundaries. And really setting healthy boundaries is a form of self love. So do it for that reason, too.

Dr. Ferguson  25:35

Thank you, Sara. Absolutely.

Supriya Surender  25:37

I think for me, I’ve never been very good at setting boundaries. When somebody makes a comment like that, it usually catches me so off guard that I become very awkward and internalize it and process it after the fact. So I’m probably not the best person to give advice here. But when I think about it from a perspective of somebody who’s supporting a friend or a family member who is struggling with alopecia areata, to echo Sara’s point, we don’t necessarily need you to fix our hair loss or solve a problem. I think a statement as simple as I’m here for you; let me know how I can support you and then let the person with alopecia drive the conversation would be so helpful. I wish that’s the kind of feedback I had received when I was struggling. Well, thank you, everybody. That was all great insight. I think when a person is going through alopecia areata, there’s often this fear that you’re going to miss out on pieces of your life that you would have had with hair. I know for me for a long time, I was convinced that because I was bald, I was never going to find love or go out in public without a wig or go on a roller coaster, go swimming at the beach. I had this internal list that I just kept adding to and knowing you have little to no control over your hair loss, how do you reframe that mindset and realize you can still have a beautiful life and have all the experiences that our friends with hair have, regardless of if you have hair or not? I’ll start with you, Sara.

Sara T.  27:13

Supriya, I love this question because this is literally what alopecia is about. It’s about moving through the loss to find joy. One thing that I do is I practice gratitude. Every morning when I wake up, I count all the things in my life that I’m grateful for, even the tiniest things because the tiniest things can be huge if you let them into your heart. For example, one thing I remind myself to be grateful for every day is the little plants in my kitchen window. To some people it might just be a plant; plants are everywhere. What’s the big deal, right? But to me, it represents nature, light, growth, nurturing, like all the beautiful things about life that just happen. And also it reminds me a friendship too, because it’s a plant I received from my close friend of mine. It’s really cliche, but you sometimes don’t realize what you have until you lose something precious to you. And losing my hair gave me that ability to appreciate the world for all it gives. So yes, alopecia has given me a lot of fear. But it’s also why I have a grateful mindset and why I find so much beauty in life, too. So I definitely recommend practicing gratitude every day, if you don’t. You really start to feel a change in yourself in the way that you see the world when you do. You really have to frame it in terms of I may not have hair, but look at all these other beautiful things that I do have. And when you’re afraid of doing something because of your alopecia, just remember that you have options to make it possible. Like when I was younger, I used to be afraid of going swimming or going to the beach because I couldn’t wear my wig. If I wore it in the water it would get ruined. So my parents helped me find a swim bandana. And it had a little hair attachment too. So it looked like I still had hair under the bandana. And I wore that and it really helped. And you know, the situation wasn’t perfect. I still had to hold on to it when I jumped into the pool, but it still allowed me to be more comfortable and swimming. And I reminded myself to be grateful for that. So yeah, practicing gratitude really changed my life.

Supriya Surender  29:13

That was so beautiful and so empowering. Thank you for sharing that with us, Sara. I love that so much. How about you, Lauryn?

Lauryn H.  29:21

I have to echo what Sara just said. It’s such an excellent question, something that I find myself contemplating because I think there are a lot of ways to sort of redefine the narrative. But one thing that I’ve found helpful in my journey is constantly challenging my mindset and treating it almost like a garden. So I’m going to use Sarah’s plant analogy a little bit but it’s really about cultivating sort of this healthy mindset and sprinkling in joy and humor and love where you can because what we can control are those parts of our day, right, how we speak to ourselves and how we sort of set up our environment and my hope with that, if I’m treating my mind like I’m tending to a garden and sort of growing what it is that supports me, regardless of having hair or not, it can help me embrace life with alopecia. And just remember that everyone is going through something unique. The experience that someone else is facing behind closed doors, we don’t always know really what it’s like. But I think with empathy, and with finding the joy in how you relate to yourself and your experience, you can find some light in what sometimes feels like a dark turn of events. So whether it’s losing your hair or losing someone you love, there’s a lot to learn about being with yourself in the present moment and relating to your experience in a different more positive way.

Supriya Surender  30:46

Thank you, Lauryn. I love that. I always like to say that you cannot have light without darkness. And so I feel like that’s so true with alopecia is well. And how about you Christal?

Christal M.  30:57

So this, again, is a great question. So for me, there’s a couple things that I did to reframe my mindset. And one of them was how I spoke to myself, because I always say this, like, you have to be so careful how you talk to yourself and about yourself, because you’re always listening. And when I really realized that I was with myself 24/7, it was like, it was in that ‘aha moment’ where I found the courage to actually look in the mirror again. And as much as I was uncomfortable with what I saw, I had to find the strength in the words to just kind of like be my own advocate and my own cheerleader. So I may not have felt beautiful, but I told myself I was beautiful anyways. And I kept saying it and kept saying it and kept saying it, even as I was bawling my eyes out and my scalp was burning, words are powerful. And I think you really have to be careful how and what you say and what you surround yourself with. Because those things can be very infectious to your state of mind. And another thing that I did to help my mindset was I did things afraid. I was petrified to do things, but I did them anyways, just because for me, I felt like if I’m not challenging myself and putting myself out there, how am I going to grow? And why am I going to allow something that I can’t control, like my alopecia, define my narrative and be the author of my story, like, that’s not happening. So I literally had to flip the script on that. And you know, it’s a tough one, because I’m trying not to cry, because it’s a bit of a trigger, but everything is in baby steps. And one thing that I did that I shared on our podcast was I learned to swim, and I’m 45 years old. So for anybody who’s listening, I was petrified of water. And I was petrified of it because I didn’t think that I could overcome the water. It was taking control. And it was like my alopecia. And I thought, You know what, if I can look in the mirror at my alopecia, then I can put my feet in this water, and I signed up for swimming lessons. And now I can swim. And I’m going to tell you something, when I put that swim cap on my bald head, it was probably one of the most liberating experiences ever. Because in that moment, I felt so free. And I felt like oh, my gosh, alopecia doesn’t have me. I have it. Like, it’s how you change the narrative. And now I go to aquafit; I’m not afraid of the water anymore. So why should I be afraid of my alopecia? So it’s doing things afraid that I really think is really important to helping you just kind of walk through this audacity of hair loss, you know?

Supriya Surender  33:22

Wow, when you said, Now I can swim, I feel like physically you could swim. But also, it was almost metaphorically, you were just swimming and alive again. And I just, I love that so much. Thank you for sharing that with us.

Lauryn H.  33:36

Dr. Ferguson, how do you redefine your identity when a physical piece of yourself has experienced such a drastic change? I guess in other words, what we’re wondering is if patients are struggling to find beauty or find the silver lining in the loss, how would you suggest they tackle this?

Dr. Ferguson  33:53

Thanks, Lauryn. I am so inspired listening to the four of you that it’s very clear to me that the place you begin is by finding others in the community who have walked the journey ahead of you so that there are some role models and there’s some wisdom that can be shared. I think it’s very hard all by yourself to try to make sense of it. Although clearly, all four of you have in your own ways redefined the narrative, as Christal said, or found a way to find gratitude or to open yourself to the new part of your life. And at the same time you’ve had support. So I think support is a piece of it role models who have walked it ahead of you and understanding and it feels like all of you have found ways to give yourselves grace that; it’s not going to be a perfect linear journey. There’s going to be ups and there’s going to be downs. And how do you give yourself a little bit of a pat on the back on the hard days and a shout out and cheer on the good days? Part of that is having a community around you as well. So support, role models, understanding is everything and takes time, all of you have shared the way in which it has evolved for you. And along the way you’ve changed. You’ve allowed yourself to change. You’ve gathered in new resources; you’ve found ways to share resources. So I’m inspired by you. And I think you all have basically written the book on this.

Adam Kegley  35:18

Thank you so much, Dr. Ferguson. And actually what you said and what our guests have said, I just wanted to jump in quickly to ask a follow up question to all of this because it was such an incredible conversation. And before we start to wrap up, I wanted to know actually, how you Christal, Lauryn, Sara, how you all met, because we’ve heard a lot on today’s recording about the importance of community and about mutual support amongst patients and then friends and family as community. And I know that you all have an incredible podcast that you’ve done, which is Alopecia’s Audacity, which is going really strong. And I know for example, before we began, Supriya was actually recognized from her social media. So I think it all just speaks to the importance of community when dealing and living with alopecia or alopecia areata, specifically.

Christal M.  36:04

Sara, do you want to take the lead on how we met?

Sara T.  36:06

Sure! Well, it was actually Lauryn and I who met first We both met when we were much younger, because we both joined CANAAF at a pretty young age. And we met through CANAAF. We first became friends as we both were searching for support from the community. And then we both kind of grew into volunteers. And both our moms joined the board of directors and are still on the board of directors today. And so we’ve kind of been through this whole journey together and kind of grown a family from it; it’s kind of beautiful to think about. And then Christal, we actually met her through CANAAF as well, when she joined the board in 2020, I believe, right, Christal?

Christal M.  36:46

I think so. Yeah, I was actually looking for someone to talk to because I had been isolating myself for over 20 years. And I was like, Okay, I can’t do this alone. And of course, me being queen of Google, I did a search and CANAAF popped up and they were having a support session. And I guess the rest is history because I attended the support session. And I was like, I need to be a part of this organization. I don’t know what I’m going to do but I need to be a part of it. And I actually applied to be a volunteer. And then I ended up being a board member. And that’s how I met Sara and Lauryn. And I feel like it’s been so magical. And I don’t know; I feel like they’re like my sisters. And if I didn’t come out of my shell, I don’t think I would have met the two of them or CANAAF as a whole. And it’s just opened up my eyes to this incredible community of people. So that’s kind of how I met Sara and Lauryn.

Sara T.  37:36

Yeah, it’s definitely a blessing to think about if none of us had alopecia, we never would have met. This never would have happened. So when we talked about silver linings, this is a huge one.

Dr. Ferguson  37:47

But it took coming out of your shells or out of your isolation that all of you and Supriya, I just love that you have this Instagram account that we can follow, that being out in the world is part of what made that connection possible.

Lauryn H.  38:00

It’s true. There’s so much beauty in vulnerability. It allows us to connect in a way that is hard to put into words, I think.

Supriya Surender  38:07

I think when I was first losing my hair, I was so scared to connect with the community because to me, it made it all feel too real. And early on, I just wanted my hair back so badly that I was just scared that anything I did or thought or ate or said would cause more hair to fall out. But once I accepted myself for who I was and connected with the community, I realized the alopecia areata community has some of the most beautiful, strong, inspiring human beings on the planet. And it’s always such an honor to meet with them, talk with them, become friends with them. So this entire podcast is just completely filling my cup today.

Sara T.  38:47

And Supriya, we are so glad that you ended up joining the community because you are such just an incredible role model and such an inspiring force. Just talking to you today has just, I don’t know. It’s just lightened something inside of me just seeing you. So thank you so much for what you do.

Supriya Surender  39:02

Thank you! That’s how I feel about the three of you right now!

Adam Kegley  39:05

It’s exactly how I feel as well actually, and I don’t live with alopecia areata! I’ve just learned so much and everything that all of you have said, I think it just beautifully sums up the inherent importance of understanding that alopecia areata and other forms of alopecia are just about so much more than lost hair. It’s about community, it’s moving through the loss to find joy, its beauty in the vulnerability and connection in vulnerability, I think, very importantly. And I think all of those things are just those true silver linings that losing hair and going through that process and living with the condition, it’s almost a vehicle to create and forge like a found family and I think a lot of people can identify with that. So I just thank you all so much for sharing because I think it’s really going to resonate with a lot of people, including those who of course live with alopecia, any forms of it, but also people who don’t live with alopecia. And I think that’s really the important lessons of this episode today. And to close, I wanted to ask Dr. Ferguson something we’ve asked on previous episodes, which is: what is one word or phrase or a piece of advice that you would want our listeners and fellow alopecia areata patients in Canada and around the world to remember from today’s episode?

Dr. Ferguson  40:26

Well, I just want to amplify something Christal said because it is universally true and clearly very true in this community. And that is how do you take control of the narrative? How do you tell your story in a way where you get to be who you want to be and live the way you do? And I’m just grateful for the inspiration that came from each story today and I’m going to take that with me because it does create hope. As you all said at the beginning of the episode, we hope this will create hope.

Supriya Surender  40:55

So much hope! Sara, Lauryn and Christal, same question for all of you. What would be your one word or phrase or piece of advice our listeners and alopecia areata patients should keep in mind? Starting with Sara.

Sara T.  41:09

Good question. I would say, “reach out.” You’re never alone in this myself, Christal, Lauryn, Supriya, CANAAF, our friends at GHLF, we’re all here to help. Nobody should struggle alone with hair loss. And there’s a wide community and lots of resources out there that can make it easier. I wouldn’t be here today on this podcast if it weren’t for my parents reaching out to CANAAF when they did. I wouldn’t have so many of the strategies and tools that I have if I didn’t later on reach out to a mental health professional to work through my alopecia in a new way. So that’s really the best piece of advice that I can give. Just reach out.

Supriya Surender  41:47

I love that. Christal, how about you?

Christal M.  41:49

I always get stumped with this question because there’s so much I want to say! I think one piece of advice I would say to your listeners is that I see you because I am you. And I don’t want you to isolate yourself the length of time that I did. Because you know, like I said before, it’s taken me 20 years to come out of my shell. And I’ve felt every single emotion that you’re feeling, to anybody who’s listening, and I get it. And the thing about hair loss is it’s disrespectful, it’s unpredictable, but it’s so beautiful if you’re just willing to put one foot in front of the other. And this community is incredible. And we’re just here to listen; we offer support. And don’t be afraid to email somebody with alopecia. You may be surprised that you’ll get a response because we all get it. And we’ve been through it. And we’re all just trying to navigate it day by day the best we can. So don’t isolate yourself and just reach out. That’s all I can say is just reach out. We’re here. We’re here, and we love you. And we think you’re beautiful with or without hair. That would be my advice.

Supriya Surender  42:52

Wow, the statement, “I see you because I am you” is so powerful! Thank you for sharing that with us. And Lauryn?

Lauryn H.  43:01

These sentiments have been so heartwarming, and I echo what Christal was saying; it’s such a difficult question just to wrap your head around. But I guess my thoughts are that it’s about the walk with alopecia, right? None is completely alike. Everyone has their own unique experience with it. But something that we can take comfort in is knowing that the roadmap that everyone’s following is just putting one foot in front of the other. So even if that sounds a little bit trite, we’re all on this similar walk. And though day to day, our encounters will differ and external factors will contribute in different ways, it’s really just about doing what you can and taking it one day at a time.

Supriya Surender  43:39

Amazing. I couldn’t agree more. Thank you so much.

Adam Kegley  43:43

Huge thanks to all of our guests today. Dr. Ferguson, Christal, Lauryn, Sara. I can’t wait for this episode to premiere! There’s going to be so many great gems in here and just to thank you all for your vulnerability and being so willing to open up and to speak with us about this. I really think it’s going to make a huge impact on the community. And it again just speaks to what this is really all about, which I think is about community and about finding strength and vulnerability. So thanks again.

Adam Kegley  44:20

And that brings us to the end of this episode of From Hair to There, a podcast about alopecia. This podcast was made possible with support from Pfizer Canada. We hope the stories insights and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Supriya Surender  44:37

Living with alopecia areata is more than just hair. It’s about resilience, identity and community. And together we’re building that community one story at a time. If our words resonated with you, please take a moment to rate us, leave us a glowing review and share this podcast with your friends, family and networks. Every share amplifies our voice and help someone out there feel understood. And if you have any questions, comments or episode topic ideas, you can email us at [email protected].

Adam Kegley  45:10

And remember: whether you’re on the path of acceptance, seeking treatments, or anywhere in between, we’re with you, from hair to there.

Narrator  45:22

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Adam Kegley  00:08

Welcome to From Hair to There, a podcast about alopecia where we bridge the gap between patients, healthcare professionals and you our listeners, we bring you diverse alopecia areata stories from around the world highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey. Hair loss isn’t just physical, it’s emotional, mental, and even spiritual. And we’re here to discuss it all. I’m Adam Kegley, Manager of Global Partnerships at Global Healthy Living Foundation and your co-host for this episode. Today I’m excited to introduce my fellow co host, Supriya Surender. She is someone who doesn’t just speak about alopecia areata, she lives it and is a fierce patient advocate.

Supriya Surender  00:57

Thank you, Adam. It’s been quite the journey for me as an alopecia areata patient advocate, and I’m here to share it all. I believe that every alopecia areata patient has a unique story and by sharing ours we can inspire, motivate and uplift each other. Whether you’re an alopecia areata patient, a caregiver, a medical professional, or someone just wanting to learn, this podcast is for you.

Adam Kegley  01:21

So tune in and let’s embark on this journey from hair to there.

Supriya Surender  01:31

We have three wonderful guests with us today, Dr. Julien Ringuet, dermatologist from Quebec City, Quebec, Canada, Dr. Laurie Ferguson, clinical psychologist from Tappan, New York in the US, and Nazin Ghaf, alopecia patient and advocate and student from British Columbia, Canada. Welcome, everybody, and thank you for joining us today. Why don’t we start with each of you telling us briefly why you’re looking forward to being with us on today’s episode. Let’s start with you Dr. Ringuet.

Dr. Ringuet  01:59

Thank you Supriya. So it’s my pleasure to be here. As you mentioned, I’m a dermatologist in Quebec City, Canada. I’m also a trialist, which means that I do a lot of clinical trials for new therapies, especially alopecia areata. And we do have some new therapies that have great efficacy that are actually already available in the US indicated by the FDA and they are coming in Canada pretty soon.

Supriya Surender  02:25

That’s very exciting. Up next, Dr. Ferguson.

Dr. Ferguson  02:28

Hi, Supriya. Thanks for that invitation. As you are a fierce patient advocate, I am a fierce advocate for patients living with chronic diseases. And so it’s a way to provide support and encouragement and good education through this. And so I’m just delighted to be here with you all.

Supriya Surender  02:47

Thank you, Dr. Ferguson. And now Nazin.

Nazin G.  02:49

Hi, everybody, my name is Nazin. I have been dealing with alopecia for more than three years now. And it was about last year that I had completely lost all my hair. So I don’t have any hair growth, currently. I don’t have any lashes, eyebrows or any scalp hair as well.

Adam Kegley  03:04

Thank you all so much for joining us today. And thanks to Supriya for getting us started. I think to kick things off Dr. Ringuet and Dr. Ferguson, I’d like to ask just a couple of questions, as you’re both health care providers, about working together for alopecia areata patients. So I’ll start with Dr. Ringuet: where do you start when you’re losing your hair if you’re a patient? And I guess a follow up question to that would be should a mental health professional be included from day one? Are dermatologist recommending health professionals as part of treatment?

Dr. Ringuet  03:36

Alright, so good question, Adam. Of course, when you know those hairs are starting to fall down, there are some questions that are coming up. So you’re in some distress, definitely because it’s an unusual situation. The important thing to remind here is that the fact that lose air so let’s say alopecia, which is a general term that includes many other diagnosis needs to have some details on it, meaning that you can lose your hair for different reasons. There are some that are let’s say hormonal, some that are passed stress, which are called telogen effluvium. And they are all very different from the alopecia areata which is an auto immune condition that, let’s say, attacks the hair. So the diagnosis is still important. And that implies either to have your family doctor on board, so you need to maybe talk to him first or either your nurse practitioners. Some of them are able to make the first diagnosis and initiate let’s say basic treatments. They can also refer you to a certified Dermatologist that can afterwards take on the rest of the treatment. To your question about the psychosocial burden of disease and do mental health professional be implicated from the start, that’s definitely important. And again, it’s patient dependent. So you definitely should talk about this with your medical provider. So if you feel psychosocial burden, psychosocial distress, and of course it’s a new thing. So it would be normal to feel those symptoms, then it would be indicated to have someone to support you, even before the official diagnosis is confirmed by one of the medical providers. But again, it always should be patient centered.

Adam Kegley  05:23

I think that’s a really good point. Dr. Ringuet. It really depends on the patient, you know, being patient by patient, what that exact patient is feeling at the moment, maybe it’s completely overwhelming, or maybe at first they seem to be taking it in stride. And I think the follow up question then for Dr. Ferguson would be: you know, considering what Dr. Ringuet said, do you see healthcare professionals working closely already together on issues like this with alopecia areata patients? Or do you think they should be working more closely together?

Dr. Ferguson  05:52

I think there’s always room to work more closely together, I think we tend to be a little siloed in our caregiving. And of course, there’s a lot of – in the United States – a lot of HIPAA regulations about that. So waivers have to be created for professionals to talk to one another. So there are some barriers to that. But I think that one of the things this podcast is really lifting up is the team approach offers the best support, but it does fall on the patient to put the team together most of the time.

Adam Kegley  06:20

Just a quick follow up there too, Laurie, that’s a really good point. And Dr. Ringuet is that the same case in Canada as well, that the onus is on the patient to put together their team?

Dr. Ringuet  06:29

So it depends, meaning that some people that are used to working with those skin diseases that have a psychosocial aspect, distress, or even just the severity of the disease, then sometimes we have those close contact with psychosocial therapists or even psychiatrists sometimes because this disease can be very debilitating in some aspects. So we do have some links. But that’s not probably true for every prescriber, especially in the first line. So there’s a part of this burden that goes back yes to the patient. And so this service, if it’s privately covered, there’s a responsibility by the patient to ask for counseling and psychosocial support. But sometimes we do use public coverage, it takes a little longer, but we definitely can access those services for our patients.

Adam Kegley  07:20

Thanks for that.

Supriya Surender  07:21

Thank you both. I love that because alopecia areata, I feel like especially when you’re first losing your hair, you can feel so alone in the struggle. So I love that you’re both promoting this team aspect to care because the more people that you have that can get behind you in this whether personally or medically, it really helps you along the way. Thank you both for sharing that. And with that Nazin, my fellow alopecia areata warrior, when we think about this team based approach to care, we almost start to create a toolkit of people that help us through this journey. Right? And so going beyond medical professionals, who else has helped you? And who else is part of your support team? And what does that look like for you?

Nazin G.  08:07

Yeah, for sure. I think one of the best people in my life that was able to actually help me get through this condition was my family. And then my friends. My family were the ones that actually pushed me to get professional help for getting a therapist, psychiatric help, and to be able to get on medication for just antidepressants, because during the time that I was losing my hair I was in very bad depression mode. And unfortunately, I wasn’t able to ask for help when I really needed it. And so it was probably after two years of me going through the constant losing and growing my hair that my mom was like, [you] really need to get some help right now. And I honestly if it wasn’t because of her, I wouldn’t be able to be here right now. And my friends supportive behavior were always with me. And they always supported me when I needed to talk to them about the differences in the way I looked. When my hair was falling, I really was embarrassed by the way I looked. And that was something that really was very hard for me as a young girl living in Canada. And just in general, it was very hard because I wasn’t used to the way I look. And I had to do a lot of things to cover up my bald spots. And even after I lost all my hair in the beginning, it was very hard for me to go out because people would just stare at me, and if it wasn’t because of my family’s and friends’ help, then I would not be here right now. So I think having that team to be able to help you just get through the things that you need to just talk to them about, it’s really important and I believe everybody should be able to still speak up because I wasn’t able to and that was something that really hurt me. And if I did it sooner, that would probably be a lot better for me. So I would really, really recommend everybody who is going through that to speak up to your family, to your friends, to professionals because they know how to help you and you never know what they can offer you actually.

Supriya Surender  10:00

Thank you. I’m so happy that your family and friends were there for you. I know that can make, you know, such a big difference and how you experience this. And there’s so many emotions that go with this. So it’s wonderful to hear that your network had that level of support for you.

Nazin G.  10:14

Yeah, for sure.

Adam Kegley  10:14

It really is. And actually, I’m really glad that you discuss that Nazinz because it actually makes me think of a follow up question for Dr. Ringuet that ties to this sort of sense of urgency that alopecia areata patients may feel when they’re dealing with an unsupportive person, which is an urgency, I think that’s connected to needing to feel supported, you know, and the loss of the expectation that you would be supported by someone who’s close to you, perhaps. And even that, that leads, I think, to my point of the urgency around getting diagnosed. And I think in that regard, Dr. Ringuet, I’d like to ask you the question, that’s: how do you actually address wait times for appointments for a specialist, when time, sometimes, is literally of the essence for someone whose hair may be falling out in clumps as we speak? I know in Canada, patients can sometimes face longer waits for specialists. So I was wondering if you could talk a little bit about how to address that. Or even just perhaps, you know, they need to come in and see someone because they’re having an issue with an unsupportive person.

Dr. Ringuet  11:16

You’re totally right, Adam. So yeah, the time to treatment and time to specialist is quite important, especially for rapidly progressing disease. So the efficacy of the referral pathway is kind of critical in that sense. You’re also right that there is some differences in terms of the health systems between country, between continents. So again, that should be kept in mind. But first of all, so if you need a referral to see a hair specialist, and that’s pretty much dermatologists in general, so to have more info in the referral notes definitely helped to prioritize the case. And that includes the severity of the hair falling down, the rapidity of the progression, the psychosocial burden associated with it and all those details help the medical provider to then classify everyone in terms of priority and see those patient more quickly. There’s also this difference between, as you mentioned, private and public coverage. So most private practices, see those patient pretty fast in the dermatology field. But when there are a lot of details, you can also be prioritized to see a dermatologist when the referral is sent on the public space, which is mostly the case for Canadian patient. So it’s just really important for the person that makes the referral to know well the system and who takes in charge those patients.

Adam Kegley  12:44

Thanks so much for that. I think it’s really good points all around.

Dr. Ringuet  12:47

And actually, on this point, I wanted to ask a question to Nazin. So your story is very touching. And you remind me of many, many of my patients that I’ve gone through the exact same pattern as you did. So we’re gonna talk a little bit more about hope and all the different treatments that are coming, but I wanted to know, so what kind of experience did you have in the regard of managing through the healthcare system? And who did you see at first and were you satisfied with your first encounters?

Nazin G.  13:16

Yes, thank you so much for asking me that question. It is actually very important to talk about my experiences, I believe. At first, when I started losing my hair, I would didn’t know what was causing it so my mom took me to my family doctor, and that was back in Edmonton, Alberta. And my family doctor, when he saw that he assumed it was alopecia. He didn’t give me an actual diagnosis at first, and they sent a referral for me to a dermatologist. And during the three years I’ve been dealing with my hair loss journey, I have seen probably more than four or five different dermatologists in this whole thing. And honestly, I would say that it did definitely take a long time for me to be able to see a specialist for my condition. And for different medications, I was seeing different dermatologists for that as well because some dermatologist did not do that medication specifically. And I would have to get referral for another medication and another dermatologist and talking about my experience about how I truly felt with the health care system in Canada. Unfortunately, everything was very slow in progression, but I was losing my hair very fast. And I wasn’t able to get the help that I really needed even from therapy from a psychologist or a psychiatrist. And it did definitely take a long time for me to be able to see any professionals but when I was able to see them, definitely they put me on different medications which was slowly helping my conditions but unfortunately didn’t do anything for me because all the medications were different. And of course they have different effects on everybody’s body. For me the last medications that I had to do, it was very slow in the treatment that I could not take it anymore. So I told my dermatologist that I need to stop this because it’s making my mental health worse, even though it could possibly help me with gaining my hair back, in hopes of gaining my hair back. But in reality, I was in a very bad situation; I was depressed. And unfortunately, there was nothing else that I could do. So I had to stop the medications that I was taking.

Dr. Ringuet  15:19

Good so are there things you wish you would have had from your medical support team, you know, a different different approach from your team?

Nazin G.  15:28

For sure, especially with the last dermatologist that I had to deal with, when they were the ones that saw how badly I was progressing with my alopecia. I had a lot of hair in I would say 2022, end of 2022. And by the beginning of 2023, I lost everything in the span of one month, actually. And they knew that I was going through a lot of different things. But instead of helping me it was just very slow for them to be able to get me help. And what I really wish that they did is that they would at least show me that they cared about my condition. Because when I was there, it was really sad because they would actually bring all their residents and medical students and they would talk to me every day, every single time I went there about my condition, and I had to explain to them every single time and I felt like I was actually a lab rat, honestly, even though it’s not a very good thing to say. But unfortunately, I didn’t feel like I was cared for. I felt like I was like just a research thing for them. But I was there; I was real. I was going through all the emotional things I was going through the all the physical things, and I wasn’t able to get the help that I needed. Even though I asked for them that time I did ask for help. I didn’t want to lose my hair. But I knew that they can’t do much for me. But at the same time, if they did show that they truly cared about what I was going through, it would have been a lot better for me just emotionally.

Dr. Ringuet  16:45

So just emphasize again on the importance of yes, taking care of the disease. And sometimes, as you mentioned, some medication have efficacies, but it’s not all patients that are able to respond to one or the other therapy. But other than the disease, there’s again the person and always treat the patient holistically is an important component to it, definitely.

Nazin G.  17:07

Dr. Ringuet, I actually wanted to ask you and Dr. Ferguson a question: if a patient had a poor experience with their doctor or care team member, how can they best advocate for themselves? Or what should they do to seek for a second opinion as well? And if there is also a therapist that they should talk to and if they’re not listening to them, what is the best advice you can give them? Dr. Ringuet we’re gonna start with you if that’s okay,

Dr. Ringuet  17:32

Yes, of course. So as you mentioned, the link between the patient and the prescriber, and the doctor is really important. And if you feel like there’s something missing or therapies or not working, the first step would definitely be to speak with your main doctor, express your feelings, express the way you understand your disease and those treatment. And it’s always reasonable, you know, to ask for a second opinion to your practitioner. It just again, needs to stay in the polite and respectful way and all of those doctors out there that are managing those harder cases of alopecia areata, because we’re talking about this now, it’s always going to be their pleasure to give this second opinion, if ever needed. So there’s no problem on that point to discuss either the disease burden or other therapeutic options.

Dr. Ferguson  18:26

And I would echo that as well. You know, research shows that the most efficacious part of therapy is the relationship, not the style or the technique. And so if you don’t feel like you’re having a relationship with the person you’re seeing with some of the most intimate things in your life, you don’t feel like they’re really listening or they care, or that they get it, it really is time to move on because the relationship is what makes a difference. And what makes me sad about this conversation is this is yet another burden on the patient. So I would really encourage you when you’re looking for a therapist, or you’re looking for a second opinion to look into the community and see those others who you share this with, what would they recommend? Who do they know, to get referrals from people who are – seem to get it, seem to be a good fit, but the fit and the care is the most important part of the relationship.

Supriya Surender  19:20

Thank you. Before I get to my question, I just wanted to add something. Nazin, I just wanted to say thank you for sharing your experience. I can relate to you so much. I lost my hair in a three month time span in 2015. So I understand that feeling. The difference is I didn’t have to wait as much as you do. And I honestly don’t know what I would have done if my hair is falling out in clumps and I keep getting told to wait, whether it was for an appointment, whether it was to see the treatment work, and I just really think it’s so important for doctors to show compassion in that moment. And I wish you had that in that moment because I remember crying in my dermatologist’s office so much because it was the one place where I felt like I could actually be truly open about how I felt about what was happening to my appearance. And I remember my dermatologist putting his hand on my shoulder and just being like, it’s okay, like, you can cry. There’s lots of tears in the hair clinic, we understand. And I wish you had that too. Because you deserve to have your emotions acknowledged along with what was happening physically to you. So thank you for sharing that part of your story.

Nazin G.  20:27

Yeah, of course, I honestly, I definitely feel for you as well, like, it’s definitely it’s such a really hard thing to go through, especially doesn’t matter how young or old you are, just because you’re a woman and there’s like that expectation for you just as a woman in this life. So just going through that whole experience is just very hard. And I really wish I had that experience too, like just being able to be comfortable in the doctor’s office to be able to just cry and just let my emotions out. But unfortunately, I felt very uncomfortable in the whole situation. And I never felt like they were there for me. So I didn’t really want to show my emotions at that time. So I would go home and cry alone.

Supriya Surender  21:07

Well, you have a friend in me now. So you’re never alone in this.

Nazin G.  21:10

Thank you!

Supriya Surender  21:12

Okay, so my next question is actually for Dr. Ferguson, and it’s actually related to stress. How do you suggest patients manage stress, and I ask this because something that many of us in the autoimmune community often hear is that stress can cause autoimmune diseases to flare up. And that notion alone is a stressor in itself, the fear that your stress can make your hair loss worse, essentially. So how do we manage that when it’s compounded by more tangible stress that we experience day to day, whether personally, professionally, other? How do we mitigate that compounding effect of stress and fear of stress with the end goal of you know, keeping our autoimmune flare ups at bay?

Dr. Ferguson  21:55

Whoo! What a question! I would think that you and Nazin probably have a lot of techniques that you use, because I think the techniques that while they are general they are usually – everybody has a specific thing that helps them but the first thing I hear in their in your question is how do we deal with the fear because I think a lot of the stress is driven by fear, the fear of getting sicker, the fear of not knowing what to do. And so really, the question is to reduce stress is to really look at what’s underneath it, what are the feelings? What’s the anxiety? What’s the fear? What’s the forecasting? And then what are the techniques that you have to stay in the present moment and to allow yourself to be reassured and you know, as Nazim said, she didn’t have a lot of practice asking for help. I think most of us don’t, I think one of the biggest stress busters are the people who love us. And that includes human beings, it includes the animals, it includes the places in nature, all those places where we feel loved, or we feel okay, and to go back to those and to use those, and they’re going to be as specific as each of you. But to find ways to reassure yourself in those fearful places, I think is the first thing that helps manage and address that stress that, as you say so well, compounds and compounds, and it really starts to run away with you. It all begins to sort of cycle up. So how can you sort of help yourself stop, come into the moment, and just calm your own heart?

Supriya Surender  23:22

Thank you. I think one other thing I wanted to bring up is a lot of times stress is caused by the distrust of what your body is doing. So I’m curious, do you have any tips to trust your body again? Sometimes it can feel so scary thinking, Am I going to do the wrong thing that’s going to cause my body to do something else that’s so emotional for me.

Dr. Ferguson  23:43

And at time when your body feels completely out of your control. It’s something has happened that your body has done that just don’t even know why or what made it happen. So how do you start to feel safe in your body? How do you start to again, sort of recognize that it’s still breathing, it’s still digesting, it’s still sleeping, it’s still allowing you to hug somebody you care about, there are still moments of pleasure. And I think it’s to bring to mind those good things along with the scary things. And it’s a task to hold those two things, right. There’s some really scary things that your body did. And they’re also some good things and to not have all your attention on the scary things or the fearful things, but also to remember the good things. I tasted ice cream today and it was delicious. I held hands with somebody I love and it felt comforting, you know, whatever those things are for you. I think that’s one of the ways you can begin to repair some of that trust in your own body.

Supriya Surender  24:37

I love that. Thank you.

Adam Kegley  24:38

So true. I love that too. And it’s such great points all around because I think it again brings up another topic that Supriya and I talked about just the other day, which is the most predictable thing about alopecia areata is that it’s unpredictable. And again, kind of coinciding with that fear that you were talking about Laurie and if a patient goes into an office, a therapist’s office, or a doctor’s office, dermatologist’s office and is desperate for something to work to help them, you know, how do you ensure that they also try and set manageable expectations and manage their expectations? And I’ll pass that over to Dr. Ringuet. First, how do you help a patient kind of manage those expectations?

Dr. Ringuet  25:17

Thank you, Adam. So yes, realistic expectations are very important. When you look at all diseases that exist, none of them have an 100% strict pathway with whom the disease goes this way, and nothing else can happen, right. So there’s always a part of uncertainty. And that’s true with life. That’s true with diseases as well. But the important part is that there is definitely hope; there is a need for resilience as well. And by hope, I mean that nowadays, we do have way better therapies for our alopecia areata patient that we did, let’s say 10 or 15 years ago. And the other important part is that most of the patients that have alopecia areata have limited disease to one two or a couple of spots. And with treatment, it resolves, and most of the time, it doesn’t recur. There are other people for whom the disease progress. And as Nazin story shown, it can progress to quite important extent. But this uncertainty is kind of part of the disease pattern. And my main message would be, again, to work with your prescribers to go through the different options, to talk about them, to set the expectation on the percentage of efficacy, what are the side effects, and then decide on the pros and cons of those treatment. But definitely, we have good hope of bringing better control to alopecia areata patients.

Adam Kegley  26:47

Thank you so much for that. Dr. Ferguson, how about you when you have time with that patient, how do you help them set those realistic expectations to navigate the unexpected when dealing with something like alopecia areata?

Dr. Ferguson  26:59

Well, I’m just really appreciating Dr. Ringuet’s sort of holding that sense that it is unpredictable. And just being transparent about that saying, you know, there are risks here, we don’t exactly know what’s going to happen just like in life, here are some of the parameters. I think being truthful with people makes a big difference. And at the same time holding that there’s hope. So I think those two things that I’m alongside as your physician or as your therapist, we don’t exactly know how it’s gonna go. But you have company, you are accompanied by someone who cares. And we have some hope, that – those two things calm the nervous system so much, you can just feel like Okay, I can trust this person, maybe the process is going to be unpredictable and it’s gonna take some twists and turns but I’m not alone.

Adam Kegley  27:46

So true. Thank you for that.

Supriya Surender  27:47

Nazin, I have the same question for you. As a person living with alopecia areata, how do you or how have you managed those expectations for yourself? And how has your care team helped with that?

Nazin G.  27:59

Yeah, of course, that’s a very great question. Because I believe everybody who is going through that should definitely know what are the best ways for them to be able to get through this condition and just come out of it stronger than before. And for me, because as I said before, when I started losing my hair, I was very embarrassed by the way I looked. So I decided that I cannot go out with the way that I just, you know, my hair looked or my eyebrows were falling out. And so this kind of made me want to learn how to do makeup. And before that I never did my makeup, I never knew how to do my makeup. And this really allowed me to experience with different things and just buy makeup and learn how to do my eyebrows and learn how to use my eyeliner. And that was really great because I was able to regain my confidence. And that was something that I definitely had lost when I started losing my hair. So it was something that not only I lost my hair, I started losing my confidence as well. So being able to just do my makeup and feel like I’m a woman again, that really was something that helped me get through the hard times. And of course, this made me feel a lot better about myself, way better for the way I looked as well. And another thing is that stress management one of the biggest things for me was that I believed that I started losing my hair because of stress. And during the time that I was first undergrad, my first year of university, I was in a lot of stress. So that was something that made me, made my body at least not be able to handle the stress. So I started losing my hair because of that. And through this experience, I really learned how to manage my stress and some of the things I do to really help me with that is of course meditation. That is something that for me have worked really well, meditation and also working out because my body is able to release that kind of stress through being able to breathe faster and my heartbeat is faster and that’s really great because I’m able to receive that oxygen that usually like just my brain isn’t really getting from just stressing. And of course, another thing is I talking to people and talking to my family, talking to my mom, talking to my dad, and talking to my best friends really, really helped me get that anxiety out, get the feeling of nervousness, feeling of loneliness, as Dr. Ferguson talked about. And we all have this resiliency in us as alopecia patients, as patients are going through [auto]immune diseases. And just knowing that we are resilient, and we are able to get through this, we can definitely come out of this stronger than ever, and I really feel like I am more confident and stronger than I’ve ever been. And even though I’ve been through all of this, I’m very, very happy with all the experiences I’ve had, just because I came out of it a lot stronger.

Adam Kegley  30:48

Nazin, I just wanted to thank you so much for sharing that. And I actually have to ask Supriya the same thing, like, how did you regain your confidence? You know, after hair loss? Can you relate to what Nazin has said in terms of how you manage stress? And just the more things we share I think for patients the better.

Supriya Surender  31:05

Yeah, I mean, I’m feeling very inspired by Nazin’s story. And I know our podcast listeners can’t see you but I have to say your makeup is immaculate, and you’re beautiful.

Nazin G.  31:17

Thank you!

Supriya Surender  31:18

So you’re really owning it. And I’m so proud of you for doing things that gave you your confidence back. Alopecia takes so much away from us. And you said, No, I’m giving myself my confidence back. And that is so awesome. So I’m very proud of you. And you know, for me, I relate so much, because when I started losing my hair, the first thing I thought was, oh, you know, I hate the way I look, I hated looking in the mirror. I felt like I was a stranger to myself. I didn’t know who this face was, you know, I lost my hair when I was 32 years old. So I had one face for over three decades. And then all of a sudden, it was just a stranger. And I hated this version of me for so long. And I think the thing that helped me the most is honestly, I had a very life altering moment in 2017, when I had a really large blood clot in my lungs. And that kind of just opened up my eyes to how short life can really be. And I had this moment as I was coming to my 35th birthday, where I was like, either I can continue to be so depressed about my hair loss forever and just live in misery until the end of time or I can acknowledge the fact that my life could have ended with that blood clot and it didn’t. And so I’m tired of being miserable. I’m going to start living my best life. And that’s really how I built that bridge to peace. I decided I wanted to live this life I’ve been gifted with. Not everybody gets to wake up tomorrow. So that’s really where my mindset shifted.

Adam Kegley  32:51

Thank you so much for sharing that, Supriya and really, I can’t say thank you enough and the same to Nazin. It’s been such an incredible discussion. I think it really goes to show the team-based approach is really a way to go in terms of supporting patients you know, with alopecia areata, and it can definitely lead to improved outcomes for them. And as we’ve done in previous episodes, since we’re at the end of our conversation, we’d just like to ask you one last question. So I’ll ask our two health care professionals starting with Dr. Ringuet. Keeping in mind what we’ve discussed today, what is one word or phrase of advice you would want our listeners and fellow alopecia areata patients in Canada and around the world to remember?

Dr. Ringuet  33:33

Thank you, Adam. So yes, I’ll do one sentence and one word. All right, so that one sentence would definitely be: Alopecia areata is more than just hair loss. As we’ve discussed today, it can have a significant impact on mental health, productivity, work-life, balance, your relationship with other people. And again, there’s also this functioning part, hair and eyebrows and eyelashes are important for communication and self image. And severe disease definitely distort this part. So that’s the very long sentence that I’m putting forward and the word would definitely be: ‘hope’. There’s more and more awareness of the disease, its impact on life. And that led to the development of newer treatments that are available, let’s say right now in the US and coming to Canada and newer ones are coming with unprecedented efficacy. So when disease control is expected by the patient, we do definitely have newer options.

Adam Kegley  34:35

Thank you so much. And how about you Dr. Ferguson, what is one word or phrase of advice you would want our listeners to remember?

Dr. Ferguson  34:41

Well, I want to pick up on something Nazin said when she said how important it was for her to keep talking. I think sometimes when we’re going through something difficult, particularly where you start to sort of self isolate, kind of pull back and stop talking, you stop communicating in that sense. And so I would want to encourage everyone to “Keep talking,” particularly patients, to keep talking about what’s going on and be willing to say it out loud and to find people who will listen to that. And those of you who are alongside, “keep listening”.

Adam Kegley  35:13

Thank you, Dr. Ferguson.

Supriya Surender  35:14

And Nazin, same question for you, what would be your one word or phrase of advice that our listeners and alopecia areata patients around the globe should keep in mind?

Nazin G.  35:24

Yes, so my word of advice, my sentence of advice actually, would be that “you should know that hair or no hair, you are beautiful, and you should own the look”. Because you never get to sometimes get the chance to actually shave your head. And for me, personally, I knew that I loved my hair too much to shave it. And going through this experience actually made me open up my eyes. And actually, I saw the way that I can look without my hair. And maybe it’s not that bad, actually! So you just need to look at the life very positively. And just enjoy every moment. Because you can always get to where you want to be just with a little bit of effort. But you know that the way that you look will never get into the way of getting what you need. And for me, personally, I want to go into optometry school. So let me tell you that you can always do what you want to do. But you just need to be confident. And you need to really love yourself to be able to do the things that you love. So I really hope that everybody is able to do that and ask for help, of course, and just be confident.

Adam Kegley  36:30

Wow, thank you so much! And thank you to Dr. Ferguson and Dr. Ringuet as well. Nazin, I think those are kind of perfect words to take us out for today. But I would just ask Supriya, what was your big takeaway from this conversation?

Supriya Surender  36:45

I mean, I had so many. This was so amazing, I think yeah, just hearing these final comments. You know, when Dr. Ringuet says Alopecia areata is more than just hair. I mean, I want to scream that from the rooftops because nobody can prepare you for losing your physical identity, one strand of hair at a time. And there’s so many facets of your life that that impacts. So I love to hear a medical professional also reiterating that; it’s such an important message. I love that Nazin and Laurie reiterated, “keep talking,” because that’s also so important. I think when it comes to your hair, oftentimes, maybe you feel scared to talk because a lot of people say Oh, it’s just your hair, it’s fine. At least you’re not dying, at least it’s not this, at least it’s not that and so you just want to go into this little shell and not talk to anybody. And so I love the message of keep talking and if the people in your life are not allowing for that, then set those boundaries and choose the people in your life that love you the way Nazin’s family and friends do because that’s what everybody with hair loss deserves.

Adam Kegley  37:57

Couldn’t agree more. Thanks again to all of our guests.

Adam Kegley  38:02

And that brings us to the end of this episode of From Hair to There, a podcast about alopecia. This podcast was made possible with support from Pfizer Canada. We hope the stories insights and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Supriya Surender  38:19

Living with alopecia areata is more than just hair. It’s about resilience, identity and community. And together we’re building that community one story at a time. If our words resonated with you, please take a moment to rate us, leave us a glowing review, and share this podcast with your friends, family, and networks. Every share amplifies our voice and help someone out there feel understood. And if you have any questions, comments or episode topic ideas, you can email us at [email protected].

Adam Kegley  38:52

And remember: whether you’re on the path of acceptance, seeking treatments, or anywhere in between, we’re with you, from hair to there.

Narrator  39:04

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Naomi Creek  00:08

Welcome to From Hair to There, a podcast about alopecia where we bridge the gap between patients, healthcare professionals and you, our listeners. We bring you diverse alopecia areata stories from around the globe highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey.

Hair loss isn’t just physical, it’s emotional, mental, and even spiritual. And we’re here to discuss it all. I’m Naomi Creek, National Coordinator at Global Healthy Living Foundation Australia and with me is my fellow co-host, Jo Burch. Jo is a registered psychologist who also lives with alopecia areata.

Jo Burch  00:50

Thank you, Naomi. It’s been quite a journey for me since I was diagnosed with alopecia areata, and I am here to share it all. I believe that every person with alopecia areata has a unique story, and by sharing ours we can inspire, motivate, and uplift each other. Whether you’re diagnosed with alopecia areata, the caregiver, a medical professional, or someone just wanting to learn, then this podcast is for you.

Naomi Creek  01:15

So, tune in, and let’s embark on this journey From Hair to There.

Naomi Creek  01:23

Professor Sinclair, thank you so much for joining us today for our episode – A New Horizon for Treating Alopecia Areata. Professor Sinclair, over the past 20 years, how has the treatment landscape evolved for treating alopecia areata?

Prof Sinclair  01:38

There’s been a couple of critical advances. The first is that we now have a better understanding as to which patients are going to get better by themselves, and which patients are going to need help. And there’s a couple of really pivotal characteristics that help define the patients who are going to need some medical intervention in order to regrow.

The first is the duration of the current episode. What we know is lots of people get a patch of alopecia areata. And if you’ve just got one patch, that’s only been there for a few months, the chances are almost 90 per cent that it will regrow by itself without any assistance.

However, if the patch is still there at six months, and you’re one of the 10 per cent in whom it hasn’t regrown, the odds go down to about 35 per cent that is going to regrow. And if it’s still there at 12 months, then the chance of at regrowing by itself are pretty close to zero. They’re certainly the patients who are going to need some intervention.

The other thing we know is that the extent of the disease is another critical factor. The patients who have lost every hair on their head do much worse, and they’re much less likely to regrow by themselves than the patients who have only lost half their hair or two thirds of their hair. And then we’ve also learned a few new things about how patients respond to treatment.

One of the things that we’ve learned is that the longer people have had their current episode — so this is people who’ve had it for more than 12 months who are receiving one of the new advanced treatments for alopecia — the longer they’ve had it before they start that treatment, the less likely they are to regrow their hair. What we’re also learning is that there’s an opportunity cost in delaying the treatment. All of that has changed how we approach our patients, and how we assess them when we first see them, how we decide who needs treatment and who doesn’t.

Naomi Creek  03:16

I see. So really early diagnosis is so important. Jo, you were diagnosed fairly quickly once you noticed some hair loss.

Jo Burch  03:24

Yes, that’s right. I think that probably comes down to the fact that I am a medical professional, and my father and brother are medical professionals, so I feel I have a very high level of health literacy. And I understand the process of seeing your general practitioner and getting your referral to a dermatologist, which I think stood me in good stead to access treatment really early.

Naomi Creek  03:46

Yeah, that’s fantastic. I guess there’s a lot of people that unfortunately don’t have that health literacy, and there might be a bit more of a delay in getting to see their specialist.

Naomi Creek  03:56

Professor Sinclair, JAK inhibitors are a shining light for treating alopecia areata. Could you explain what they are and how Australians can gain access to them?

Prof Sinclair  04:06

Well, I suppose the best way to describe it at the moment is that the JAK inhibitors are an emerging treatment. One of them has been approved by the TGA, which is the Australian Therapeutics Goods Administration, which means the doctors can now prescribe it. However, these medications cost about $2,000 a month so they’re pretty much beyond reach for most Australians, and they don’t receive any government subsidy at this stage.

At the moment, I think it’s more case of the emerging treatments or treatments that we can look forward to being available within the next couple of years. But there’s still a number of hurdles that they need to go through before they’re widely available.

Now this class of medicines is actually a Melbourne invention. At the Walter and Eliza Hall Institute of Immunology, there’s a researcher called Professor Andrew Wilks, who discovered the Janus kinase pathway. These are a series of chemicals inside the cell that take the signal from the cell wall to the cell nucleus. In other words, when there’s a signal in the blood or in the solution in between the cells, it can bind to a receptor. That message then has to be taken to the cell nucleus in order for something to happen.

Andrew Wilkes discovered that pathway probably close to 20 years ago. This led to the development of a range of medications that interrupt that pathway. They disrupt the transfer of that signal from the outside of the cell to the inside of the cell. That has led to new treatments for leukemia, for myeloproliferative disorders. for rheumatoid arthritis, inflammatory bowel disease, alopecia areata, eczema, vitiligo — a whole range of conditions whereby that pathway is critical in the development of the disease. It’s probably been a really exciting thing.

I think, at the most recent assessment, the annual sales of these medications worldwide for all those range of different diseases is about $20 billion each year. They’re just starting to emerge as a treatment for alopecia areata. We’ve seen the first two of these medications licensed by the FDA in the United States. They’ve also been licensed in Europe, Japan; one of those medications has now been licensed in Australia for alopecia areata. But there’s also another dozen or more that are under development coming through the regulatory pathway through the clinical trials and (will) also be available for prescription in coming years.

Naomi Creek  06:16

It will be so wonderful for patients when more of these medicines become available in Australia.

Naomi Creek  06:21

Jo, as someone living with alopecia areata, what do you think about the new treatment options like these JAK inhibitors?

Jo Burch  06:27

Yes, Naomi, I can say that the JAK inhibitors for me have been life changing. My hair has completely regrown. I have had no relapses since my diagnosis in 2019. However, as Professor Sinclair touched on, the cost is a significant impact and consideration for many people looking to treat their alopecia areata with JAK inhibitors. And I definitely think that is something that we need to consider and make some more change on.

Naomi Creek  06:55

That’s amazing to hear the success you’ve had with those. So, you’ve had to fork out a lot more money, so it’s not accessed via the PBS?

Jo Burch  07:03

Yes, that’s right. So I pay a couple of $100 every few months plus the ongoing costs of dermatologists and GPs. For me, I’m in a very privileged position to be able to afford the medication. But I am very aware that that is not the case for all people diagnosed with alopecia areata.

Naomi Creek  07:23

As a mental health professional, what advice would you give to someone who can’t afford medication? This has to take an emotional toll and cause even more stress?

Jo Burch  07:33

Yes, the emotional toll, I would say, is very high. And the advice I give is investigate clinical research trials. Professor Sinclair at Sinclair Dermatology offers research trials, and there is the potential to be able to be put on JAK inhibitors via these research trials.

Naomi Creek  07:52

Fantastic. Professor Sinclair, at what stage of a patient’s journey would you typically prescribe a JAK inhibitor, and how have they impacted the lives of your patients?

Prof Sinclair  08:02

At the moment, they’re really only available to Australians to participate in a clinical trial. There’s a number of clinical trials that are going on. A number of them have already concluded and are no longer recruiting. But there’s also some new ones that are just starting.

We’re currently recruiting, for patients aged 12 to 17, to participate in a alopecia areata trial. And there’s a couple of new trials that we think will start in the coming months. There have been patients who have accessed this medication on a private prescription where they’ve paid for the medication themselves. But because of the cost of these medications that, on the whole, has been largely quite limited.

Naomi Creek  08:35

Clinical trials can indeed be intimidating and scary for some patients and these feelings are completely understandable. Professor Sinclair, it’s vital for patients to continue their prescribed treatment to maintain hair growth. What are the implications of this continuous treatment and what might happen if a patient chooses not to seek treatment at all?

Prof Sinclair  08:55

At this stage, we understand how to initiate treatment when a patient has hair loss, and that will hopefully lead to hair regrowth. It’s not universally successful. In the clinical trials, it was getting up to around about 50 to 60 per cent of patients. But there were certain subgroups that did better.

People with short disease duration or people who had sub total hair loss (people who hadn’t lost it all) tended to do better. When we augment the treatment with other agents like minoxidil or with injections of cortisone — some of the standard old fashioned treatments — if we combine the treatments, you can often get response rates up to about 80 to 90 per cent; but it’s still not 100 per cent so not everybody regrows.

But if they do regrow, we are still learning about how we will stop the treatment. Now there’s an optimism that we will be able to stop the treatment because historically when we have treated people in the past, about a third of the people who had treatment success, we were able to stop the treatment without relapse and often have very long-term remission.

So we’re optimistic that there will be a group of patients, whether it’s a third, whether it’s more, whether it’s less – we don’t know at this stage – we will be able to treat them, fix their hair, and then withdraw the treatment and in fact, we’ve already got about two dozen patients in our clinic who have now regrown their hair with a JAK inhibitor, we’ve withdrawn that treatment and, two years later, they’ve still got all their hair without new relapse. So we are optimistic that this will be the way. The good news, however, is that we don’t have to withProfaw the treatment because these medications were designed with a safety profile where it was anticipated that they would be used lifelong. So patients with rheumatoid arthritis, they take it for the rest of their life. Patients with the leukemias, the milder fibrosis, they take it for the rest of their life. Probably going to be the same with the inflammatory bowel disease patients as well. The safety profile is such that you don’t have to stop the treatment. In fact, I have a number of teenage girls who have now been in remission for four or five years. I’d like to try and lower the dose but they won’t have any of it. They’re petrified of losing their hair again, they just want to keep on going with the tablets. I’m comfortable enough with the safety profile of these medications that I’m happy to do that. Obviously, they still require monitoring. What we have also learned over the years is that hair regrowth can be a little bit brittle. We’ve had patients who go away for a long weekend and forget their tablets and are skipping the tablets for three, four or five days, it all starts to fall out again. Usually you can salvage that relapse, but every now and again, you can’t. Every now and again, just that interruption to the treatment,  – probably a week or two would be more like it rather than two to three days – sometimes they get a relapse. You restart the treatment and the hair doesn’t stop falling out and nothing works. And in that situation we’ve been fortunate that we’ve been able to switch JAKs (changing from one medication to another within that family) and many of them have been able to regrow their hair, but it’s not universal. This is a lot of work that we’ve been doing over the past three to four years. Starting to anticipate what we do after we’ve initiated the treatment in terms of managing the minor relapses, managing the major relapses and working out what are going to be the guidelines for gradually tapering the treatment and ultimately, in some cases, being able to withProfawal the treatment without them relapsing.

Naomi Creek  11:49

So there’s a bit of work to do in understanding this whole landscape, I guess.

Naomi Creek  11:53

Jo, patients must have so many unknowns when they start treatments. How do you think patients handle this?

Jo Burch  12:00

Yes, Naomi. The uncertainty with alopecia areata is probably one of the biggest challenges involved in the condition and Professor Sinclair touched on, for me, one of my biggest concerns and worries which is relapse. I have stayed on JAK inhibitors and I’m considering with my husband having a family and in order to do that I have to come off JAK inhibitors. And that really is something that concerns me. Will I relapse? Will I be a third of the patients that Professor Sinclair touched on who maintain hair growth without being on treatment?

Naomi Creek  12:36

I understand and how did you feel when you started your treatment and your hair did start to grow back?

Jo Burch  12:43

My dermatologist and my family were very excited for me. However, when I saw my hair growing back, once I started on JAK inhibitors, I think I was hesitant. I didn’t want to believe that it was going to work because again, we know alopecia areata is so uncertain. And I thought if I latch on to this idea that this is going to work and then potentially it doesn’t or I relapse, I didn’t want to let my emotions get in the way and potentially get let down. I can recall that I was very restrained in my excitement and I think I waited about two years until I, in myself, actually went phew okay. This is okay, my hair is back and I think it’s here to stay. I did have a short relapse and Professor Sinclair talked about other medications. I also take minoxidil for hair growth, but had to add in some steroid injections when I did have a relapse in about 2021. So, in the back of my mind, even though my hair is here – and it has been here since I started on JAK inhibitors – there is a small part of me that sometimes goes oh is it actually here to stay? And the biggest would be when I have to stop the medication to have a family. There is a great deal of concern that I might lose my hair and also if I restart JAK inhibitors, is my hair going to come back?

Naomi Creek  13:59

Yeah, so much uncertainty to navigate with your planning a family? What advice would you give to others who might go through a similar experience with similar feelings? What do you wish someone told you?

Jo Burch  14:10

Look, that’s a difficult question. I feel like everyone’s journey is so individualised. For me. I’m so confident at being able to talk about my alopecia with people who I don’t know. So I have been on TV programs. I have done interviews. I’m doing this podcast. For me, I feel really comfortable talking about it with people who aren’t close to me. If you ask me that question people who are close to me I don’t want to talk about my condition at all. So, I feel like the advice I give is do what is right and best for you, do what you feel comfortable with. It surprised me one day that someone who I’m quite close with, I just suddenly felt comfortable to talk about it. So I often say if the moment’s right and you’re feeling safe, then do what you need to do. I also really advocate, given my profession, to find a mental health professional who you trust and can speak with because I think the act of just talking about what’s going on for you – whether we can problem solve it or not – but just having that dialogue can be really powerful in coming, I think, to the ultimate treatment for the psychological side, which would be self acceptance. And having to make peace with this is not your fault, you didn’t cause this. And sometimes there’s not much we can do about it. And we’ve just got to kind of find that inner strength through, “Alright, I’m just gonna have to get on with whatever I’m doing here”.

Naomi Creek  15:25

Amazing advice, Jo. Thank you.

Naomi Creek  15:28

Professor Sinclair, are there particular patient profiles that should especially consider treatment.

Prof Sinclair  15:33

Generally, the patients who are going to get better by themselves don’t usually need these sort of medications. So patients who have got short duration of disease, one or two patches, they don’t merit treatment. The people who will merit some form of what we call systemic treatment, usually a tablet or an injection, the sort of patients that will merit those are people who’ve had their alopecia for more than six months, probably even more than 12 months without it getting better. Patients who have severe disease. So more than 50 per cent of the scalp hair loss or, alternatively, patients who have got very visible hair loss. Because, if the hair loss is at the front of the scalp rather than the back of the scalp, it might be more disfiguring. Patients with eyebrow or eyelash loss; that can also be quite disfiguring and so patients can be very distressed by that. Also, patients who are really finding it very difficult to cope with the hair loss because of the way in which it’s affecting their mood. So there’s going to be a number of patients for whom these treatments will be appropriate. And the big problem, I suppose, at this stage is going to be how they get reimbursed. Because the cost of bringing these Profugs to market for alopecia areata, generally to bring a new Profug to market, costs the company that sponsors it about $2 billion. So the price of the medication, when it’s sold to the public, reflects that investment that they’ve put in it in terms of doing the research. And the cost of development is really Profiven by the regulators who are really concerned that any new medication is fitting a safety profile. So most of the medications that are currently prescribed in Australia would never get through the regulator today. Things like prednisolone, that would never get through a regulator today because of the associated side effects. So the modern medications are being held to a much higher standard with regards to safety and effectiveness. And because of that, that’s translating into the cost of these new medications to bring them to market.

Naomi Creek  17:12

I see, so we really need as many affordable medicines available as we can so patients can start treatment as early as possible.

Prof Sinclair  17:19

There are some of the very early JAK inhibitors. There’s one called tofacitinib, that is probably coming very close to the end of its patent life. And that’s going to bring the cost down quite profoundly. That might be one way of patients accessing these treatments, once the cost comes down, that they’ll be able to access it through a private prescription. At this stage, there’d be very few Australians who could afford to pay $2,000, month after month, year after year to access these medications. And the issue for government with the PBS is how it’s going to fund it because the innovations are coming through. So diseases like alopecia areata, for which the government’s never really spent a cent, they’re being now asked to come and find some new money to support this to make it available to the patients. And I think the government’s amenable to it if we can demonstrate that this is going to really improve people’s lives. That’s the work that’s being done at the moment to try and quantify it, in a numeric way, what the benefit is going to be to the Australian community so that the government can make sure that they’re allocating their limited funds to the patients who need it the most and who are going to derive the greatest benefit.

Jo Burch  18:23

Professor Sinclair, when you’re discussing patients, we know that many can have reservations based on their past experiences with ineffective treatments. How do you think we can rebuild patients trust and encourage them to consider new treatments?

Prof Sinclair  18:37

Well, what we’ve seen with other diseases where this has happened, conditions like psoriasis and eczema, is that patients are cautious, often for six months, a year, two years. But once the word gets out that they’re safe, they start to know other people who’ve been on it. I think they find a lot of comfort in that.

I think it does also come back to the regulators these days, and their tolerance of risk is just about zero. So a lot of the medications, which I think the alopecia patients are referring to, are things like prednisolone, azathioprine, and methotrexate. None of those would get licensed these days if you took them to the regulator and so I think that the new medications, as I said, are being held to a much higher standard. They’ve got a much stronger safety profile and so I think there is comfort in that.

But there’s always risk because you don’t have 20 years safety data on a drug that only been around for 10 years. So it does take a while to accumulate the safety data. It’s always possible that we’ll learn things down the line. But the other thing that we’ve also been doing in Australia is that we’re leading the worldwide patient registry. We’re actually recording patient safety data on a global registry. And we’ve already got 1000 patients enrolled on that registry from all over the world.

We’re developing prospective safety data so that we can actually identify if there are any long term safety issues associated with these medications. And of course, sometimes you find suspicions of a safety risk turned out not to be substantiated. So, in other words, there are illnesses that occur in the population in the things that are common, like, for example, COVID infection.

And so sometimes when these drugs come out, you find you get a cluster of patients who get a COVID infection. And suddenly people are wondering whether this drug has somehow caused it. But having registries and being able to compare it to the background population data, it allows you to separate the true safety signals from the background noise. That’s where it becomes really important to collect this data. Because on the one hand, you don’t want to miss a safety signal, miss a safety risk. But on the other hand, you don’t want to destroy a drug for an alleged safety risk that turns out not to be true.

Naomi Creek  20:33

So Jo, what was your biggest apprehension about starting your treatment?

Jo Burch  20:38

For me, coming from a very health literate family, I didn’t have any medical risk or concerns in regards to starting treatment. For me the biggest apprehension was, will this work? And, I guess, will this be effective? I know, for a lot of people, they have concerns around side effects and risk. And as Professor Sinclair was talking about — the, I guess, longevity in terms of how does medication impact the human body — that’s very individual to each person’s experience of alopecia. In saying that, mental wellbeing is very crucial for alopecia patients. Professor Sinclair, how do you feel dermatologists contribute to this aspect?

Prof Sinclair  21:17

Well, it’s actually very complex, because we do do questionnaires to assess patients’ level of mental wellbeing and we do support them through that. But patients often don’t fully disclose the way in which their disease is affecting them. And that’s actually been one of the main barriers to reimbursement, particularly in Europe. So one of the drugs was rejected for reimbursement because the level of distress that patients indicated on the standard questionnaires was below the threshold where the government thought this was a worthwhile treatment.

So one of the things that we’ve got to do is we’ve got to find better metrics so that we can score the distress. We’ve been working very hard on that to try and define what it is about this condition that disrupts people’s lives so much and how the standard measures that we use for asthma or we use for heart failure may not necessarily capture the way in which alopecia areata impacts people’s lives. And so we’ve got to work hard to create the metrics.

The other thing that we know is that the problem with alopecia for most people is that it’s disfiguring. It changes their appearance in a way that they perceive as negative. So it doesn’t make them more beautiful, they feel it makes them less attractive. And that change in their appearance intrudes on all their professional and their social and their romantic interactions. It makes people feel less capable to participate in those work, social, and romantic endeavors and that really has a profound effect on people’s happiness.

So one of the things that we need to do is work closely together with hairdressers to make sure that, when people have patches, that we use simple techniques to empower people to disguise it. Just in a way that people use makeup to disguise a blemish, we can also use camouflage techniques to disguise patches of hair loss — which then enables people to get about the day to day life without actually having every person they meet enquire about “What’s happened to your hair?” in a way that disrupts the way in which they would like to interact with those people, rather than having conversations that they don’t want to have.

Naomi Creek  23:09

We’re actually doing some work in that area with hairdressers, funnily enough. So it’s something really important, and also the voice of patients, as you say, sharing that lived experience of the impact it actually has for when submissions are put into the Pharmaceutical Benefits [Advisory] Committee. That’s really important just to get to hear all of those patients’ voices to know that impact, isn’t it? As you say, if they’re not hearing that, the government aren’t going to deem it as a necessary medicine to pass through.

Prof Sinclair  23:38

I suppose on that first point, we actually have a full hairdressing salon in our dermatology practice for that exact reason. And we train hairdressers to become experts in understanding hair loss conditions and working out how to disguise them, how they can use wigs, how they can actually enable people to get back to work while they’re waiting for the medications to work and regrow their hair. Because, often, even a successful medication might take three, four, six months to work and people need to get on with their life in between times.

And with regards to the government, the government’s got a really difficult job because we all wear two hats. One hat is that we’re an advocate for the patient with alopecia areata to make sure that they can actually access the support that they need and that they’re entitled to from government. And the other hat we wear is as as a taxpayer. And so, I’m sure you know, if the government came along to you and said, “We’ve got this fantastic new treatment for brain cancer, we just need another cent in the dollar tax from everybody”. Most people would say, “Yep, fair enough”. And then they come along and say, “Well, we’ve got another great new treatment for breast cancer, we just need another cent”. And now they’ve got one for heart failure and another one for childhood leukemia. And then suddenly, you’re getting to the point as a taxpayer, we’re saying, “Hang on, I can’t keep doing this. You know, the government’s got to manage it. They’ve got to allocate the resources. They’ve got to make these hard decisions, and I don’t want to pay all of my earnings in tax. I want the government to allocate that money in a way that is fair and is reasonable. And I want them to use some strong metrics to make it accountable so that we pay them as much tax as we need to pay, but no more.”

Naomi Creek  25:02

I’d like to ask Jo; can you share something about your experiences with hairdressers?

Jo Burch  25:07

Look, again, I feel like my journey with alopecia has been a very privileged one. My mother-in-law is a hairdresser. So I think the day after I found my 20 cent patch, I went straight to her and I said, hey, what do you think this is and she actually straight away said I’m pretty sure that alopecia areata. So, she already had a very high understanding of what the condition was. She had had other clients in her salon with alopecia.

From that she was able, as Professor Sinclair discussed, able to assist me in disguising it through sort of hair fibers, or styling my hair in a certain way, or cutting it in a way that I preferred. I’ve also visited the hair salon at Sinclair Dermatology and that was after my hair started to regrow with the JAK inhibitors. The hairdressers there were really supportive in being able to create a style for me that hid the hair growth but also made me feel comfortable in myself and my appearance and self-confidence.

Naomi Creek  26:03

Incredible. It’s fantastic that you’re able to access the hair stylists through the dermatology clinics. I guess not everyone has that opportunity. But how did you find the conversation with stylists at the time?

Jo Burch  26:16

I think I specifically chose the hairdressing salon at Sinclair Dermatology once my hair started to regrow from the JAK inhibitor treatment because I knew that they would approach me in a way that would make me feel comfortable. They’re obviously specifically trained in alopecia and they understand that experience for the sufferer. So, for me, that was why I chose to go there. But yes, of course, you might not live nearby, that might not be possible for you. So I think it would be finding a hairdresser who you do you feel comfortable with.

Again, if that is not a possibility, I know on the Facebook groups, the support Facebook groups or on Alopecia Areata Australia Foundation’s Facebook group, they have links and resources available to people where hairdressers who particularly have an interest in alopecia or have worked with people before or are comfortable have put their details there.

So you can sort of do a little bit of a search and find someone in your area who you know, might actually have a background to cutting or styling your hair. I think that is a big consideration. Because you know, walking into a hair salon and trying to have a conversation with a stylist who has no idea, it would be terrifying.

And I know in my case at my mother-in-law’s hair salon, a couple of her staff had never come across alopecia. I was confident to be able to talk about my experience and have them ask me questions. But I think on other days, maybe I wouldn’t have had that confidence and I wouldn’t have wanted to have that conversation. So finding someone who maybe has a bit of a background can be a first step.

Naomi Creek  27:48

That sounds great. And is there any pieces of advice you would give stylists or hairdressers as to how to talk with their clients about their hair loss?

Jo Burch  27:56

Yeah, sure. Look, the advice I would probably give would be non-judgmental, ask questions, but also listen and gauge the person’s body language, tone approach. If they’re looking like they’re not wanting to talk about it, then respect that. But then also if the person is giving signs that they’re okay and comfortable, then use that as a moment or a tool to educate yourself on alopecia areata.

As we know there’s many different forms of alopecia. Most people are not aware of that so I think depending on the situation, see sort of what the person is giving you. But yeah, really non-judgmental, open, curious and just coming at it from a really, I guess, kind-hearted approach.

Naomi Creek  28:41

Wonderful, thanks Jo. It’s such a visible condition areata. So what about the invisible effects of areata? Can you explain how you coped with the hair loss at that point?

Jo Burch  28:53

Yes, and Professor Sinclair touched on the professional, social, romantic impacts of alopecia. They’re, again, very individualised but very widespread.

You know, one memory that comes up for me is going to gym in the morning, I exercise every day and I had to get up and either style my hair or wear a hat or wear a headband. I didn’t want people at gym to know I had alopecia. Professor Sinclair again touched on that conversation. You know, you’re going about your life and you don’t always want to have that conversation with people. You want to be asking about their life and their interests and your life and interests, not talking about your conditions.

So as a professional, I would say find ways that make you feel comfortable in presenting yourself to the world and going about your day. For me that was styling. That was hair coverings, I bought quite a few wigs, hats, headbands. Potentially, little changes to my life that meant that I could go and do what I needed to do without having to have those conversations.

Continuing on with what Professor Sinclair touched on, which was, for me, with the JAK inhibitors, it took about 12 months for my hair to regrow from bald to a couple of centimeters long, and for me, there was a considerable impact on my job as a psychologist. I didn’t want my clients to know that I was wearing a wig. This session isn’t about me. I didn’t want to be talking about my life in my client session.

And I think the biggest thing was, will people know? Will people be able to see the hairline of the wig? Will my clients realise that last week I had shoulder length brown hair, and tomorrow my hair is, you know, down to my chest, and it has blonde highlights.

And, I think, as a psychologist that leads on to my next question which is, we know in Canada and other countries, there is a growing emphasis on that holistic care approach or that multidisciplinary team-based approach for alopecia. And we know that includes dermatologists, mental health professionals, GPs, et cetera. Professor Sinclair, could you speak a little bit more on your perspective with Australian patients?

Prof Sinclair  30:54

This came up a lot when we were making applications to start conducting paediatric trials in Europe and some bright spark in Europe thought that alopecia areata is a disease that’s caused by stress and causes stress. And so maybe we don’t need to treat the hair loss, we can just address the stress and save a lot of money. So they started to impose requirements that patients see psychologists and fail a course of treatment with a psychologist before they embark upon a treatment to regrow their hair.

Now, there’s a couple of flaws in that logic. One is that we know for certain that alopecia areata is not caused by stress, despite what every policeman, every bus driver says. Stress is not the cause of alopecia areata. I think it’s time to lay that one to bed. And it’s a little bit like peptic ulcers in Australia, every single peptic ulcer in Australia was caused by stress right up till the day they discovered the bacteria and we haven’t had another one since.

So when people don’t know what they’re talking about, they say stress, stress, stress, stress — nothing to do with stress! And it’s pernicious because the implication that it’s caused by stress suggests that the patients actually brought this on themselves and it’s the patient’s fault and they’re to blame for their own disease. So I think we need to put that one to bed.

The second thing is the suggestion that if you improve their stress level, that you’ll regrow their hair — absolutely zero data to support that. The third thing is that a psychological intervention is going to reliably reduce stress. I think that’s quite debatable as well. I think that there’s it’s multifactorial, and there’s certainly no proven intervention that will reliably reduce stress.

So I think the idea of mandating holistic treatment sounds like a good idea at the outset, but in fact, if it ends up being an artificial barrier to patients accessing the treatment, then it’s defeating its purpose, particularly if you’ve got a disease where delaying treatment will actually reduce the likelihood of that treatment success. So I think we’ve got to be very careful that we don’t just introduce things that sound like a good idea without actually having a strong rationale for doing that and looking at what the potential consequences are.

All for multidisciplinary care that involves bringing in hairdressers, bringing in other health professionals, nurses, where there is a clear benefit. We also do use psychologists a lot with the children to help them address the bullying. And so we do a lot of roleplay with the children, where we get them to rehearse how they might be teased in the schoolyard, so that their first response isn’t one that entrenches the bullying behavior, but actually helps them fight back.

And so having the opportunity to rehearse that with the psychologist and to play that out can actually be very beneficial. And that’s a role where it is very useful. But I think a lot of it’s got to be left at the discretion of the parents as to what resources they want to take advantage of. Also left at the discretion of the medical specialist who is well-trained in this area. And I think it’s reasonable to make resources available to patients.

Groups like the Australia Alopecia Areata Foundation are really useful in terms of bringing charitable donations to making them available to patients with these conditions so that they can actually access some of these treatments. I think they should be available when they’re needed, but they don’t necessarily need to be mandated. And importantly, they shouldn’t become, as I said, an artificial barrier to patients accessing these treatments.

Jo Burch  34:00

Thank you, Professor Sinclair, you raise a good point. I know when I was first diagnosed, a lot of people did comment and say, “Oh, are you stressed? Is your job as a psychologist stressful? Maybe that’s the reason you have alopecia”. And I really like the way you articulated the experience of feeling that shame that you have caused this yourself. I think that encapsulates quite nicely the experience as a sufferer myself.

Naomi Creek  34:23

Professor Sinclair, you talked about the children seeing psychologists to manage their condition. Do you refer many of your adults to use psychologists?

Prof Sinclair  34:33

We used to refer a lot more. Now that we’ve had access to really effective treatments in the clinical trial setting and through our clinic, we’re finding that we’re referring less. But in fact, one of the people that we’ve had in the clinic for a number of years was a trichologist, who’s a hairdresser who’s trained, got additional qualifications in understanding about hair loss conditions and the treatment. And we find that that’s also very useful for having someone who’s not necessarily a health professional, but someone who can communicate with a patient and a language that they can relate to can also be very beneficial.

And people will disclose a lot of things to their hairdresser that they won’t disclose to the doctor and having someone who’ll just sit there and listen sympathetically can be really important. So there’s all sorts of resources that can be useful in addition to what we might think of as the standard allied health professionals.

Jo Burch  35:18

Professor Sinclair, as a sufferer myself and considering treatment, as well as talking about the advice we would give to hair stylists and hairdressers, at what point do you think someone should be alarmed about their hair loss? And when do you think they should consider consulting a dermatologist?

Prof Sinclair  35:35

So everybody loses hair as they get older. So there’s not a single 50-year-old on this planet who’s got hair like a 15-year-old. Most of the hair loss that we see in the community is what we call androgenetic or hormone and an inherited hair loss. So male pattern baldness, female pattern baldness — everybody loses their hair to some degree and that’s a slow and gradual process that occurs year after year.

Lots of women notice increased hair shedding, so they noticed the hair coming out the brush or comb. They normally have a sense as to how much hair they should be losing, but certain things can change and suddenly that can accelerate and that can be a cause of concern. And if women are shedding a lot of hair and it’s been going on for more than three or four months, then that’s a sign that they should consult a doctor for diagnosis to find out what’s going on.

Alopecia areata is a particular type of hair loss, it’s fortunately much less common than the male pattern baldness and female pattern baldness. It probably affects about 2 per cent of all Australians. One in 50 Australians at some point in their life will get a circular patch of hair loss that just comes out of the blue.

And I think if you get a sudden onset, circular patch of hair loss out of the blue, that would be a sign to go and see your general practitioner. They may be able to provide a treatment. They might be able to give you some guidance as to whether it needs a referral to a dermatologist. But certainly, if it’s been there for more than six months, then that would probably suggest that a referral to a dermatologist would be beneficial.

Jo Burch  36:51

I can personally relate to the sudden onset of the circular patch. For me, it was really out of the blue. A friend said, “Hey, I think you’ve burnt your hair with your hair straightener”. And we had a look and it was yeah, about a 20 cent size Australian coin patch at the bottom of my head. And for me then that prompted seeing my GP which then included a referral to my dermatologist. We’ve also discussed treatment. Professor Sinclair, once a patient consults a dermatologist and is on a treatment plan, how regularly should a patient be in touch with their dermatologist?

Prof Sinclair  37:28

That depends on the diagnosis. That depends on the treatment they’re on. It depends on what other illnesses they have, what other medications they might be taking. All of that is generally done in consultation between the doctor and the patient. But on the whole, many of the patients we see in the clinic, we might be seeing at six weekly intervals. Some we’re seeing at six monthly intervals, some we see once a year. So it’s sort of it varies a little bit on what stage they are in their disease and how healthy they are, what other medications they’ve got and how they’re responding to the treatment.

Jo Burch  37:56

So it sounds like it’s very individual and based on many different factors. What do you think from a patient’s perspective would be the critical questions that should be asked during their visit with a dermatologist?

Prof Sinclair  38:10

Well, I think the question everybody wants answered is, “Why is this happening?”. The next question they want to know, they probably want to know is, “What will happen if I don’t do anything? Is this going to be a permanent hair loss? Is it going to get better?”. Then the third question will be, “Well, what are my options? And what are the consequences of not being treated at this stage?”. And I think they want to know, “How urgent is it that I pursue the treatment? Is this something that we can watch and wait? Is it something that needs to be done now? And what are the options?”

And then the treatments usually need to be tailored towards the patient’s expectations, the patient’s appetite for risk. Some people are very risk averse. Some people are happy to try a treatment. It also relates to how the illness is impacting the patient’s life. Some people are largely unaffected by the hair loss and other people are profoundly affected. And a lot of that comes down to the way in which it makes you look.

So if you’re a 60-year-old man who suddenly goes bald, many people might just think you’ve got male pattern hair loss,. You’ve shaved your head and you might be able to function normally without the alopecia areata intruding in a negative way on your day to day life. Of course, if you’re a woman, that’s a different story. If you’re a young teenage boy, then that’s also a different story. So it’s how it impacts people, how they feel that impact, their appetite for risk, and their general health and what they can tolerate.

Naomi Creek  39:24

Professor Sinclair, you mentioned the teenage boys, I understand there’s actually a risk of suicide with boys who live with alopecia areata.

Prof Sinclair  39:32

So one of the things that we learned a few years ago is it’s not just teenage girls who are preoccupied with their hair. Teenage girls who have got long hair can tie back in a ponytail can often conceal 10, 20, 30 per cent hair loss without anybody else noticing it, and so they can actually get on with their life relatively unimpeded.

What we found was that boys are also concerned about their physical appearance. They’re also concerned about how they fit in with others, and when they’ve got short hair, even a small patch can be immediately obvious. And if people are self-aware, self-conscious, invested in their physical appearance and how they look and how they dress, that patch of hair loss can be a major concern for them. And what we saw with some of the young teenage boys is that they refused to go to school when they had a patch of hair loss because they knew that they were going to stand out and, quite likely, they were going to be teased and bullied. The insecurity about their physical appearance together with school refusal, together with social withdrawal, that can lead to a downward spiral.

And that can really be a source of concern. And fortunately, suicide amongst people with alopecia areata is exceptionally rare. But a particular at-risk group is young teenage boys who get sudden onset, early onset alopecia. Not even necessarily that severe, but if it does lead to school refusal and social isolation, that really is something that needs to be acted on urgently.

And both parents and doctors need to be aware about how it can impact people and make sure that they get their skates on and start to give these kids some treatments. And also, some tools to camouflage it so that they can get on with their life and get back into the things that they like to do.

Naomi Creek  41:06

Jo, have you had much experience, I guess, as a psychologist dealing with similar situations like this with children who are dealing with self-esteem issues, and maybe in particular, someone living with hair loss?

Jo Burch  41:17

Yeah, great question. Naomi. I’m thinking of a teenage boy. He comes to mind and Professor Sinclair makes some good points in that, for females, there is a greater society value to having hair as a woman. Hair is still your identity and whether you’re female or male, you use your hair to present who you are, and the particular styles and ways that, I guess, we can colour it or change it.

And this young boy that I’m seeing at the moment, he really used his hair to show people his kind of style and he would colour it quite regularly. And when I’m thinking about him and the other aspects of alopecia like depression and anxiety, they really come to mind and I think he has found it particularly difficult to find that self-acceptance.

I know I’ve shared a little bit about my personal experience with him in our sessions. And it’s been hard because I have been able to access things like wigs, eyelash extensions, eyebrow tattoos, makeup, and for men and for boys those options are quite different and quite limited. And I think that does present its set of challenges as Professor Sinclair touched on.

Naomi Creek  42:26

Yeah, and, I guess, also with the regrowth that’s a whole other ball game, isn’t it? You know, for men particular, women can just throw a wig on or wear a headband, but a guy with short hair has some patches growing back. That’s quite challenging.,

Jo Burch  42:40

Yes, most definitely. And then this young person I see often wears a beanie. But when it’s warmer weather that also can be challenging, he will continue to wear a beanie because that is what makes him feel safe. But I know he then faces questions at school. “Why are you wearing a beanie? It’s so hot,” because he doesn’t yet feel comfortable sharing his diagnosis with his peers.

But yeah, that’s a really good point. The regrowth I think for men can be a lot harder to camouflage and hide and like I touched on, you know, for a female eyelash extensions or eyebrow tattoos, they’re sort of things that we already do as females. A lot of us who have hair will get eyelash extensions or alterations to our eyebrows. So, as I said, it presents a different set of challenges, I think, for the specific genders and your sort of treatment and journey with alopecia areata.

Naomi Creek  43:27

Professor Sinclair, one of the JAK inhibitors, ritlecitinib, is yet to get to Australia, but that will be available for people at a younger age, won’t it?

Prof Sinclair  43:37

So we did the clinical trials in ritlecitinib. Ritlecitinib is a JAK3/TEC kinase inhibitor. It’s highly effective in alopecia areata. When we did the phase two, and then the phase three clinical trials here in Melbourne, we were enrolling adolescents aged 12 and over. So now that this has gone to the regulators in USA, Europe, Japan, it is now fully approved for children aged 12 and over.

Naomi Creek  44:02

So, it really sounds like having these medicines like ritlecitinib available to the younger generation will be a real game changer. So people can get onto treatment straight away and hopefully not be impacted by the condition.

Prof Sinclair  44:16

It’s an exciting time because we are learning so much more about this condition. And the options and the strategies are becoming much better informed. And I think that’s really to the benefit of our patients and to everybody involved. I think that the advances that have occurred in the last two to three years merit a second look.

So if you’ve been to the doctor five years ago, 10 years ago, and you didn’t like anything that they had to offer, now might be the time to go back and have another look and see whether some of these newer treatments are worth considering.

Naomi Creek  44:47

Well, thank you, Professor Sinclair. It’s been an enlightening conversation today. And turning to my co-host Jo, I want to ask you, what message of hope can you share with other patients living with alopecia areata?

Jo Burch  45:00

Thanks, Naomi. What I would say is remind yourself, it’s not your fault. And you didn’t cause this. I know when I was finding it hard to go to gym in the morning and styling my wig or putting my hat or headband on and like, oh, my gosh, people are going to interrogate me at the gym as to what’s going on with your hair, I would look in the mirror and say, “This is not your fault. You didn’t cause this”.

I also liked what Professor Sinclair said, which is reinvestigate treatment. There is hope there. For me, treatment has been amazing and it has really changed my journey with alopecia.

And the final thing I would say is, it’s hard, but try and make that self-peace and that self-acceptance. That really, “What is different in your life whether you have hair or don’t have hair?”, And for me, I go, “Well, I can still go and do gym, whether I have hair or don’t. I still have the ability and sort of that physical capacity”. So trying to as hard as it is find that acceptance within yourself that really your life doesn’t have to be all that different whether you have hair or not.

Naomi Creek  46:01

Amazing. Thank you, Jo, for your input and amazing insights.

Jo Burch  46:05

You’re welcome.

Naomi Creek  46:09

And that brings us to the end of this episode. We hope the stories, insights and voices we’ve shared have touched you, educated you and made your journey a little brighter.

Jo Burch  46:18

Living with alopecia areata is more than just about hair. It’s about resilience, identity, and community. And together, we’re building that community one story at a time.

Naomi Creek  46:29

This podcast was made possible with support from Pfizer, Australia.

Jo Burch  46:34

If our words resonated with you, please take a moment to rate us, leave a glowing review and share this podcast with your friends, family and networks. Every share amplifies our voice and helps someone out there feel understood. If you have any questions, comments, episode topics, you can email us at [email protected].

Naomi Creek  46:57

Until next time, remember whether you’re on the path of acceptance, seeking treatments, or anywhere in between we’re with you from hair to there.

Narrator  47:10

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Naomi Creek  00:08

Welcome to From Hair to There, a podcast about alopecia where we bridge the gap between patients, healthcare professionals, and you our listeners. We bring you diverse alopecia areata stories from around the globe highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey.

Hair loss isn’t just physical, it’s emotional, mental, and even spiritual. And we’re here to discuss it all. I’m Naomi Creek, National Coordinator at Global Healthy Living Foundation Australia and with me is my fellow co-host, Jo Burch. Jo is a registered psychologist who also lives with alopecia areata.

Jo Burch  00:50

Thank you, Naomi. It’s been quite a journey for me since I was diagnosed with alopecia areata and I am here to share it all. I believe that every person with alopecia areata has a unique story and by sharing ours we can inspire, motivate, and uplift each other. Whether you’re diagnosed with alopecia areata, the caregiver, a medical professional, or someone just wanting to learn then this podcast is for you.

Naomi Creek  01:15

So, tune in and let’s embark on this journey From Hair to There.

Naomi Creek  01:23

We’re excited to have two guests joining us today. Chel Campbell is a business analyst and founder of the Australia Alopecia Areata Foundation (or the AAAF) where she volunteers her time as President and Treasurer. Chel will be sharing some of the important work the organisation does for those affected by the condition.

We will also be chatting with Leanne Raditsis, who is 48 years old and currently completing a Master of Teaching at Latrobe University. Her alopecia story began 15 years ago when a small bald patch appeared on her scalp, which eventually led to her becoming completely bald. With the right support and access to advanced treatment, Leanne managed to regain a full head of hair. Thank you both for joining us for a chat.

Naomi Creek  02:09

Chel, tell us about your relationship with alopecia areata and what made you start the Australia Alopecia Areata Foundation.

Chel Campbell  02:18

So my journey started over 28 years ago. And it started with my son being diagnosed at 20 months of age. We went to the dermatologist and were diagnosed with alopecia areata. Going back, if you go back 28 years, the condition was not well known. And the treatments were not acceptable to a 20-month-old child. So we left the dermatologist with the idea of how do we normalise our child into society.

Going back the 28 years, appearance diversity wasn’t a word that was actually common, where it is common now. So we worked on the factor of how do we normalise Ryan into society. And to do that I went through and created school packs and created papers so that people were understanding of what his condition actually was.

So we just continued on that path for many, many years. And we had little pockets of support groups around, but they didn’t cater to the needs of our child. So therefore, I thought, “You have to be seen, this condition has to be seen so people can actually understand it, and not get it confused with other conditions that are in our society”. To do that, we had to be brave and bold, and get out there and spread the word. So that’s why I created the foundation and been on that journey ever since.

Naomi Creek  03:38

I know you spend so much time on the foundation doing such amazing work. How do you keep going after 15 years of running it?

Chel Campbell  03:45

I still have the desire. I still see the need. We just had a kid’s camp and the feedback from the kids’ camp when you actually get a child coming back and saying, “Yeah, I was scared to go at first, but I didn’t want to leave. I made great friends and I really…

Naomi Creek  04:04

That’s amazing.

Chel Campbell  04:04

Yeah, I really feel fantastic”. Yeah, it’s little comments like that, that make it all worthwhile. We had the Victoria open day last week and a child that I met over 10 years ago, is now a little, well, he’s almost a man, and you know, he just came in and gave me a great big hug and just said, you know, “Thank you so much”. Yeah, it’s those little things that keep me going in regards to it. There’s still a need.

We don’t have a cure. We don’t have a successful treatment. We’re still going through trials to get to a stage that we will be able to offer a consistent treatment throughout. And until we can do that then there is the need. There’s always going to be the need to engage people and welcome people so that they can experience and talk about their own personal journeys.

And how do I manage it? Very hard. But, basically, I work full time and on the weekends is when I basically dedicate one full day to the foundation. And I typically will respond to correspondence throughout the week. We have a fantastic committee, and we have great volunteers that assist in some of our major projects that we operate. So I lean on them quite happily to do a lot of the heavy lifting.

Naomi Creek  05:23

Chel, what other role does your organisation play in helping patients navigate and manage their condition, particularly, I guess, when they’re first diagnosed,

Chel Campbell  05:32

So the AAAF has a website. And we also have private social media groups. We engage with the dermatologists, hair industry, and also trichologists, the primary ones that will introduce patients to our group. From there, they can navigate through the website and find all of the information that we actually provide.

So when they do find us, we do a welcome to them. And we encourage them to engage within our social media platforms so that they can get that one-on-one chat happening with other people or like people going through the same sort of journey.

We do also offer several programs within the foundation. And one of those programs is the No Hair, We Care pack. And this pack is a welcome pack. And, basically, it has lots of little goodies and information in it to help them understand what alopecia areata is actually about. Dr Google is great in providing information, but it’s not necessarily accurate information. So we give that information to the individuals to help them start on their journey.

We typically find, with individuals, they’re very eager and hungry for information at the start of their journey. And they will then make a active choice as to which way they want to take care of themselves. Now it might be that they go down a medical path, or it might be that they want to actually embrace their new look, and how do they go about embracing that new. And we then have different information that we provide to them, depending on which path that they would like to undertake.

Naomi Creek  07:07

That’s amazing. It sounds like you provide so many resources for patients.

Jo Burch  07:12

Thanks Chel, for me AAAF was quite pivotal in my experience with alopecia areata in a really positive way and particularly when I was initially first diagnosed, as you mentioned. Leanne, would you be able to share a little bit more about your life with alopecia and the impact on you so far.

Leanne Raditsas  07:29

So, my journey actually began at 15 years of age. So that’s 33 years ago. And it took a little while. I’m in regional Victoria, so there was quite a few dermatologist visits to Melbourne, which is a two hour drive from Shepparton. And eventually I did get a diagnosis of alopecia.

At that time, it was just alopecia areata. So a very small patch, probably the size of a 10 cent piece on my scalp. So when I finally found a dermatologist that gave me a correct diagnosis (it) was fairly simple to treat. At that time, he put a couple of steroid injections, and I was okay from then on for quite a few years.

And as Chel said, it wasn’t something that I’d ever heard of or seen, or even the GP or other doctors weren’t that aware of it. It was a little bit of a long road to even just getting a diagnosis and an understanding of what alopecia was 33 years ago.

And so that was fine. Every so often, every couple of years if I got a little patch, we’d just get a steroid injection, and it wasn’t a huge deal until quite a few years later — so eight years ago — it went rampant, and it just rapidly disappeared. So I had a couple of patches, booked a dermatologist appointment sort of nine months out because there is a lag time and a difficulty in getting into a dermatologist.

And by that nine months, I had pretty much lost more than 50 per cent of my hair. So I knew the steroid injections weren’t going to cut it that time round. So I got a topper and then I got a wig and then I had to look at other medications. That was a bit of a cycle and a stressful rollercoaster. You know, “Will I go down this medication track? Will I not. Now that I have a wig, do I just go with the wig and be done with it?”

Yeah, it’s a very stressful, unpredictable condition that I feel sometimes you know, it holds you hostage, you don’t know what’s going to happen next. I was very anxious, a lot of anxiety, a lot of stress around what possible outcome you know, was going to lead to a lifetime of baldness or a medication that might fix it. Either option has costs, wigs are very expensive, they don’t last that particularly long. You need to get new ones and medications are expensive. So a lot of crossroads and a lot of decisions to make along the journey.

Jo Burch  09:51

Yes, most definitely. And I think what you were talking about in terms of, you know, my role as a psychologist and all of I guess those challenges that come with that alopecia, I’m interested in particular as to what support and resources you sought out to manage your condition and I guess manage all of those ups and downs along your journey with alopecia areata? ,

Leanne Raditsas  10:11

Well, that’s where the AAAF comes in. When I discovered their Facebook page, I was like, “Wow, there are heaps of other people that have this condition”. Whereas in the beginning, I felt like some sort of bizarre freak that you know, the only person in the world that had dealt with this, and then the foundation’s website, a lot of information there.

I was very, very private about it, wouldn’t discuss it with absolutely anyone, wouldn’t get around the house without a wig, rarely would I take my wig off in front of my husband. So it was a very secretive sort of thing. And so when I discovered the Facebook page and some other support pages, Facebook pages. There was a forum that I could be truthful and honest and upfront about what was going on. So that was like two worlds, you know, that was a secret world where no one knew what was happening. And then there was those forums where you could be truthful and honest and deal with that in a more open way. So that was really helpful.

Chel Campbell  11:09

It’s interesting that you’re saying Leanne, because when I first started the foundation, the questions that always came in were, am I the only person that actually has this disease. And now I never hear that. It’s not an email that I actually receive anymore. So it does actually show how well the awareness of alopecia areata is progressing throughout our community.

Naomi Creek  11:31

Fantastic. Leanne, your story continues, where you manage to get onto some treatment and wanted to ask you about how you found that and just a little bit of your journey through that.

Leanne Raditsas  11:42

So, through the ups and downs of trying a lot of different treatments, quite harsh, usually used for cancer treatments and different sorts of drugs. I had some really harsh medications, and then some other medical issues that I felt like were implications of the harsh medications. So I went medication-free for about a year.

At that time, I was probably early 40s. So I was studying for a Bachelor of Business. I’d gone back as a mature-aged student to uni and I discovered academic articles and Google Scholar and the world of academic articles and research. And so what I found in that year that I was medication-free and trying to regain my health and worry less about my appearance and my hair was that there are treatments out there and that there are options. Some new treatments, the JAK inhibitors, they were very new at that time, eight, nine years ago, being discovered in new trials for certain conditions that are more prevalent, like rheumatoid arthritis and psoriasis.

And so what I discovered in that year that I was medication-free is that there was a JAK inhibitor, a substance called tofacitinib, that was very successful for rheumatoid arthritis and psoriasis, but another person that had multiple conditions also had their hair totally regrow because they also had alopecia So I was super excited when I saw the pictures of a totally bald head, much like my head was, and a progression of hair growth to a full head of hair.

At that time, I was still considering whether I should go down the medication route or just live with it with my lovely wig. But what happened was I noticed other health issues. I felt like I had joint pain, I felt very tired. And this was all with no medication. So I couldn’t then blame the other medications or any other substance.

I live quite a healthy life. I’ve never smoked. I’ve never drank alcohol, rarely. So I felt like my body was attacking itself to a point where it was out of control. And I felt much like you know, if you’re a diabetic that you might need insulin, you have to have it. I felt like my body was attacking itself to a point where it needed a correction. So I went to my dermatologist. She said they hadn’t had anyone on tofacitinib but they could access it.

It was very expensive. But I’m in a very fortunate position where finances aren’t an issue and I was willing to access that drug at any cost. And so my dermatologist worked with me. It took three or four months for her to get approvals. And they actually, rather than bring the substance and pay full price for it, they were able to make it at their own compound pharmacy in different dose amounts. So we went on to that medication. It was very successful. So I had no other medication other than the tofacitinib and I went from a bald head without one single hair to a full head of hair in nine to 12 months and then have never had to wear a wig since. That was probably six years ago now and that was fantastic.

So what’s happened then after that I went on certain doses, we dosed up to an effective dose. Then once that was effective, a full head of hair regrew. Then we dosed down to a maintenance dose and then, during COVID, I went off all medications and I’ve never had to go back on them. So I’ve been off all meds for four or five years and I have maintained a full head of hair medication free. So I now have a full head of hair. So that was a miracle in many ways.

Naomi Creek  14:23

Wow, that’s an amazing success story, Leanne, and I know that you’re a bit of a poster girl for some of the dermatology brochures as well showing your lovely locks. And you’ve also shared your story in awareness articles and publications. As a patient advocate, what positive impact do you think sharing your story has had on yourself and on others living with alopecia areata?

Leanne Raditsas  15:36

Well, much like the academic article that I found of the gentleman’s hair that went from totally bald to a full head of hair, it gives hope. Those pictures are very obviously and overtly showcase what’s possible. And for some people, they’re happy to be bald, and I get that too. So I don’t make any judgment on that. But for me, being bald felt like walking out the front door naked. The vulnerability, the exposure. Would you walk out your front door naked? And if you did, how would you feel? And that’s how I felt leaving the house with no hair.

So it was very emotionally stressful, a lot of anxiety, a lot of concern around professional life, what sort of profession should I work in, you know, wearing a wig has limitations. So it would just impact every aspect of my life and so having the access to these medications, and now having a full head of hair, and medication free, it’s absolutely amazing for me.

Naomi Creek  16:33

Chel, how important are people like Leanne, who live with alopecia in sharing their lived experience with others.

Chel Campbell  16:39

Every individual who can tell their story is vital. As Leanne said, she wasn’t comfortable with a naked head. But there are people who are comfortable with a naked head, who will also tell you know, their story, and why and how they’re comfortable in it.

Alopecia is very unpredictable and it’s probably the one thing that everybody struggles with. Because today, I have hair, tomorrow, I may not have hair. I may not do a treatment and my hair grows back. I may do a treatment, my hair grows back, but then my hair falls out. So it is still very unpredictable in regards to living with alopecia. That is probably the biggest struggle that people come to the foundation with to try and live through as such. So everyone’s story is vital.

We do collect lots of people stories, which are on the website, and so that when people are newly diagnosed, they can go through and they can read how different people are going through their journey and make that decision that I mentioned earlier. “Do I want to go down the medical path? Or do I want to go down, you know, a concealing path? Or do I want to just be natural and have my own natural look?” So everybody within the foundation, or our community, provides that information and that helping hand to everyone else that comes on the journey with us.

Naomi Creek  17:56

You’ve certainly got a wealth of lived experience with your patients through the foundation. And I guess people can connect with those who they feel comfortable with and relate to so it’s a terrific thing.

Jo Burch  18:08

Chel, the foundation runs a kids’ camp and I actually had the pleasure of being able to attend this two weeks ago in Adelaide, and it was great fun. Tell us a little about the camp and why it’s so important for children and parents to feel empowered and like they have access to things like the camp and resources.

Chel Campbell  18:26

The camp came about because we were getting comments “Am I the only person with this disease?” So how could we actually bring people together so that we eradicated that question? To be able to do that we started off with a very small camp and I think we had 25 children that went to Dubbo Zoo and it was just fantastic, because it was regional. We brought a lot of regional kids together. We brought kids from all over Australia. And just to see them interacting and talking to each other was just great. And they all left with huge smiles on their face.

So from that day on, we have put on a kids’ camp. Prior to COVID, we were having around about 130 people attend the camp. Two weeks ago, we had 100 people attend the camp. So it’s still very popular in getting together and making those memories and making those lifelong friends. And one actually went to the 21st birthday of his friend and they’ve kept that relationship you know for the eight years which says wonders.

Jo Burch  19:30

Yes, most definitely. And I think that was, you know, the experience that I had attending, I guess, as a volunteer on the camp. I’m going to change direction a little bit and ask you some questions around wigs — and I know at the camp we actually had a presentation on wigs and it was really lovely to sit there and watch the kids be able to try on different wigs and just sort of see that experience for them.

In talking about wigs we know, and I can speak personally as well, they can be really powerful, and Leanne spoke as well to this, in helping you regain your identity. Finding wigs, as Leanne mentioned, can be challenging. I know for me, it was difficult. The cost is quite a significant barrier. How does AAAF assist people in accessing wigs?

Chel Campbell  20:12

So there’s a couple of things in regards to wigs. So across the states, several of the states actually have a health rebate that you can tap into. So they do provide that, and that is for adults and for children. But many of the states have no funding at all.

AAAF does a couple of things. We do advocate within the states and work with health ministers to bring greater funding that is available, put different protocols in place to be able to access the funding, and make it very specific for people with alopecia to be able to actually get on to these areas.

But AAAF also runs a program which is called Grant a Wig. And currently the Grant a Wig program, it’s an educational program that was started to see if children wanted to go into wigs. Because the expense is high, if the child doesn’t understand how to care for the wig, and you know they just grab it at the top and pull it off, the wig’s not going to last very long. So it does make it a huge expense on the parents.

So we created that program back in 2011. And we actually give, about 30 grants a year are granted to the children. If they decide that they want to continue into wearing a wig after they’ve gone down this path, there is a sister program that is run by Variety, where children can apply and get full funding for their wigs. So AAAF has provided the opportunity as a progression path for them. We also run spot competitions, if you want to call it that, where people can enter competitions and things like that and be either granted money towards a wig or be put in contact with wig providers that are providing wigs for those competitions, as such.

Naomi Creek  21:59

That’s very thoughtful and kind of you. Leanne, when you decided to wear a wig, how did you feel walking out the first time? Tell us how you felt?

Leanne Raditsas  22:08

It was an absolutely amazing transformational experience. My wig that I purchased, it was a human hair suction cap wig. So it was one that was very secure. Prior to that I’d had other wigs that weren’t that secure. So the wig posed a whole new set of issues – while it would cover your hair, a windy day would be a nightmare and so many other things.

Now wigs have progressed significantly in the last 10 years as a lot of things have improved in that instance. And there are a lot of different systems now to secure wigs much better. But yeah, my life changed when I got my suction cap human hair wig, so I could do everything else I wanted to do other than say, you know, going for a deep dive or a waterski with that wig. And then my attitude changed, my life changed, and my outlook changed. And it was a really pivotal time. The wig was, for me, a game changer.

Naomi Creek  23:01

How did others respond to the wig, just out of interest? Friends and colleagues perhaps. Did they even notice? I mean, I guess if they knew your story they would have but how did you find others? Did they even notice?

Leanne Raditsas  23:12

Well, this is the thing. I never told anyone I had alopecia. No one ever knew I had alopecia. Every topper wig that I had would mimic the hair I had three or four years prior to that, so I maintained that secret right through. So no person knew that I’d had a wig outside of my immediate family.

And when I felt comfortable enough, and my hair was regrowing and I had a lovely wig, I started telling people and every person that I told nearly fell over backwards. They’re like, “What! I can’t believe what you’re telling me”. And then because I was a bit more confident at that point, I’d pop the wig off and really surprise them. Because I had really short hair at that time, it was fascinating. So once the hair started regrowing, I felt more comfortable sharing the story. But up until that point, I hadn’t told a soul, other than people in my household and my parents.

Naomi Creek  24:06

Fantastic.

Jo Burch  24:07

Chel, would you mind letting us know a little bit more around how AAAF get involved in providing access to treatments for alopecia areata?

Chel Campbell  24:14

AAAF is very involved in getting individuals on to the trials and working with the dermatologist to get access to it to increase the actual numbers for the trials. And also doing several surveys out to our community to obtain the quality-of-life characteristics based on an individual’s perspective and a financial perspective, because they’re the metrics that are missing from being able to give the pharmaceutical companies the information they need to go towards the government to champion getting the JAK inhibitors onto the PBS.

Naomi Creek  24:51

One last question to you both. What is your message of hope for those just starting out on their alopecia journey. I’ll go to Chel first.

Chel Campbell  25:00

Be open and honest in regards to your diagnosis, because it will help with your mental health. You can start within your immediate family and once you’re comfortable within your immediate family branch out, go to your friends, go to your peers, and then you know, go to a wider audience. But be open and honest and you will find that you progress to acceptance of your condition a lot quicker.

Naomi Creek  25:24

And Leanne?

Leanne Raditsas  25:25

OK, so I am very hopeful. Between the advancements we’ve had with wigs, with medication advancements and the medical profession with awareness and people having more awareness and it being less of a secretive issue and easier to come out about it because of the great work like the AAAF have done.

Raising that awareness, people understanding that that condition is not contagious. You’re not dying. You know, it’s an autoimmune condition and that gives me hope that people have a better understanding — the broader community to have a better understanding — of what alopecia is. And for those that are suffering with alopecia, have a better understanding of what their options are and the financial resources to help them explore those options and the right option that feels right for them at any given time. That gives me a lot of hope. And I think we’ve made huge progress. So I’m super hopeful and super excited.

Naomi Creek  26:20

Fantastic. Thank you so much Chel and Leanne for coming on today and sharing such amazing insights on alopecia areata.

Chel Campbell  26:28

Thank you, Joanne and Naomi and Leanne for this opportunity to actually explain further what alopecia areata is to our community.

Leanne Raditsas  26:38

Thanks, Naomi, Joanne, and Chel for this really great conversation. Keep the conversations going, keep the awareness happening, and keep searching out your options. We’ve got a great bright future ahead for alopecia.

Naomi Creek  26:55

And that brings us to the end of this episode. We hope the stories, insights, and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Jo Burch  27:05

Living with alopecia areata is more than just about hair. It’s about resilience, identity, and community. And together we’re building that community one story at a time.

Naomi Creek  27:15

This podcast was made possible with support from Pfizer, Australia.

Jo Burch  27:20

If our words resonated with you, please take a moment to rate us, leave a glowing review and share this podcast with your friends, family, and networks. Every share amplifies our voice and helps someone out there feel understood. If you have any questions, comments, episode topics, you can email us at [email protected].

Naomi Creek  27:44

Until next time, remember whether you’re on the path of acceptance, seeking treatments, or anywhere in between we’re with you from Hair to There.

Narrator  27:56

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Naomi Creek  00:08

Welcome to From Hair to There, a podcast about alopecia where we bridge the gap between patients, healthcare professionals and you our listeners. We bring you diverse alopecia areata stories from around the globe highlighting the challenges and successes of living with alopecia areata and reminding you that you are never alone in this journey. Hair loss isn’t just physical, it’s emotional, mental, and even spiritual. And we’re here to discuss it all.

I’m Naomi Creek, National Coordinator at Global Healthy Living Foundation Australia and with me is my fellow co-host, Jo Burch. Jo is a registered psychologist who also lives with alopecia areata.

Jo Burch  00:50

Thank you, Naomi. It’s been quite a journey for me since I was diagnosed with alopecia areata, and I am here to share it all. I believe that every person with alopecia areata has a unique story and by sharing ours we can inspire, motivate, and uplift each other. Whether you’re diagnosed with alopecia areata, the caregiver, a medical professional, or someone just wanting to learn, then this podcast is for you.

Naomi Creek  01:15

So tune in, and let’s embark on this journey From Hair to There. In today’s episode, we’re chatting with Katie Hale, who is a communications professional and former journalist and she was diagnosed with alopecia eight years ago as a 23 year old. Katie is a proud advocate for people with alopecia and encourages people to embrace and accept the condition so that they can live their life to the fullest. Thanks so much for joining us today. Katie.

Katie Hale  01:45

It’s my absolute pleasure to be here.

Naomi Creek  01:47

You have an inspiring story. Can we go back eight years to when you were first diagnosed? Tell us about that time and some of the mental hurdles you went through?

Katie Hale  01:57

Yeah sure, so I was working in a pretty stressful job at that period. And I found this little, tiny spot on the back of my head. And I didn’t really know what it was, I thought I had maybe burned my scalp while I was straightening my hair or just something like that. But it was just a small, shiny, smooth little spot. And I, kind of, just kept touching it for, you know, a few months and it didn’t really change. I thought, “Oh, that’s a bit weird, my hair is not growing back, but it’s not getting worse”.

And then it felt like it started to get a little bit bigger. It definitely did start to increase in size and all of a sudden, I had a few other spots popping up. And then within about the space of a week, I lost half the hair on my head and things just progressed rapidly from there. Basically over the six-month period lost all hair across my body and that’s never come back.

The rapidness for me was probably the biggest thing. There wasn’t anything that I could do to kind of stop it or to at least halt or slow that progress. And so the mental hurdles that came up with that were really, really challenging. It was completely out of my control, I had no idea what was happening. And it was really stressful. My whole appearance changed within, you know, the space of a week and I had to shave my head and you know, had long blonde, beautiful curly hair. So it was a real change to how I saw myself or how other people saw me.

And then just the not knowing, like not knowing if it would come back, not knowing what the condition was, not knowing anyone with it, it was this whole new thing. And that, in itself, brings with it a lot of challenges mentally trying to adjust to that and trying to just hope that you know, there might be something that could happen that you know, would bring your hair back. It was something I didn’t know existed before it happened.

Naomi Creek  03:39

What a really traumatic time you must have gone through. How did you even explain it to those around you, your loved ones and the work colleagues, etc.

Katie Hale  03:48

That was a really hard one because there were only a few people that were really close to me that knew what was going on when I had the patches. I had a few work friends that, you know, like I was obviously really stressed out. And so a couple of them knew what was going on.

I didn’t tell my family really until I was about to shave my head. Like, I think I told my mum that you know some stuff was going on. And then yeah, I told my dad pretty much the day that I had to shave my head., I was like, “Just a heads up that, you know, my hair has been falling out I don’t know what’s going on”.

So I’m about to shave my head and then that was almost one of the most freeing things for me because I basically shaved the sides short and had a little bit long on top. And it meant that I put a photo up on Facebook and I had a bit of an essay to go with it. And it’s basically saying, you know, “Some people know, but most don’t, this is what’s been going on. My hair has been falling out. I don’t really know anything about, you know, but this is me taking charge and me taking control of what’s been going on. And it’s just a little bit more obvious now”. And so it wasn’t a shock for people, like, it was a shock but it wasn’t so much of a shock having the explanation to go with it instead of just seeing a photo suddenly going, “Oh well, why has Katie no longer got any hair?”

The work one was really hard. I was working in TV, and there aren’t many people, if any, that look like me on TV. And so that one, as a producer, that one was really scary because it meant for me that, or it felt like, I’d lost a lot of my career options. I had just finished uni I was just starting out. And suddenly all the things that I was working towards were potentially gone. And so that it felt like it was really career limiting.

And also working in a television station, it is so much about looks, Like, as much as it isn’t, it also is.  And so, walkng into there the next day, and suddenly looking completely different, I felt like I was about to be sick.  Like, it was so stressful and anxiety inducing, and people could not have been more lovely and supportive. It was so heartwarming, but still, yeah, very, very stressful.

Naomi Creek  05:47

Yeah, it sounds like it would have been pretty traumatic for you to go through that. It’s sad that our society is all about looks, but I congratulate you for just going in there with your shiny head and saying this is me. That’s fantastic.

Katie Hale  06:00

Thank you.

Jo Burch  06:01

Katie, you mentioned, I guess, quite a few of those mental and lifestyle hurdles when you were speaking then. When your alopecia progressed so rapidly, what sort of coping mechanisms did you use to get you through that time?

Katie Hale  06:13

To be honest, not many. It was all about survival at that point. I was just trying to keep afloat and there wasn’t anything that I particularly did or was consciously doing. I knew I had to kind of de-stress and get out of my head a little bit. And so I tried doing yoga for a little bit just as a, you know, calming down and being active a little bit.

To be honest, that wasn’t super helpful for me at the time. I found sitting in that silence something that was actually quite triggering for me, because my brain was so overstimulated that it was — it’s something that has helped over time — but in that immediate point, it was just getting up and trying to keep routine and trying to keep working and doing all of those things.

I stayed connected with all my friends and family quite often and relied on their support quite a lot to keep me propped up. But at that time, like, at 23, I didn’t really know what to do or where to go or how to handle it. I’d never really gone through anything life changing like that before. And so that was very, very new. If it was to happen today, again, it would be a completely different scenario. Like, I’ve got so many different things and tools in my little tool belt that would help me but at 23, I had no idea what I was doing.

Jo Burch  07:22

Look, that leads me really nicely into my next question, which is how would you cope today?

Katie Hale  07:28

For me, exercise is huge. That’s the thing for me, it’s that, again, routine and stability. But exercise is, like, I trained really hard. It’s the thing that keeps me sane. And it’s just a bit of an outlet. Like, I focus on eating really well, working with a therapist, like a psychologist, like, that’s something that is so, so critical. Because it just helps you process what is going on. And having someone there to, you know, bounce your thoughts and ideas off and understand why you’re feeling the way you are or why you’ve got certain perceptions of yourself in your head.

Or what, you know, like, for me, I’m very self-conscious still in certain situations and I really feel that. And I really noticed the eyes on me, especially when I’m in a situation where I don’t really know many people, like, I’m very hyper aware of that. And so working with a therapist to, you know, process, what’s going on there and why I’m thinking the way I am. And also just accepting exactly who I am, like, this isn’t going to change. For me, this is pretty much me for life, I suspect. So you know, I’m better off dealing with that now and processing it, then if, you know, then trying to bury it and hide it.

Jo Burch  08:34

And I would agree with you that acceptance is probably the biggest thing I would talk about in my sessions when I’m working with people who have alopecia. It’s a really hard one to do, as you touched on, but I often say, you know, “This is not your fault. You didn’t cause this”. And trying to find, yeah, that inner kind of peace or okayness, for lack of a better word, around, okay, “This is my life, and how does my life actually change?”

Well, it doesn’t really, I can still, you know, as you said, go and exercise and eat and see my friends and see my family. And, whether you have hair or not, those things are still the same. But I think working towards that point, as you said, can take a lot of time and a lot of professional support as well.

Katie Hale  09:13

That’s it. It’s like and you know, some of those things for me because I do have (alopecia) universalis, like, head to toe. Some of those things do change a little bit. Like, exercise is a little bit harder because I’ve got no eyebrows or eyelashes to stop the sweat going in. Or I’ve got, you know, like all of those kind of little things you take for granted that you don’t know until that hair is gone. And you’re like, “Oh, it actually serves a function”. Like, you know, so those little things. But it doesn’t stop you, like, it doesn’t have to stop you from doing it. It’s just slightly different.

Naomi Creek  09:42

Katie, despite all your challenges you’ve just discussed you’ve really embraced living with alopecia and are an outspoken advocate for others living with the condition. What made you want to become such a positive voice for others?

Katie Hale  09:56

For me, one of the hardest things when it all happened was, I had never seen anyone that looked like me. That I suddenly went from looking and fitting into everyone to being completely bald. I had no eyebrows and eyelashes, so that really makes you stand out. And people did stare, people still stare at me today when I’m walking down the street, or like, people have made comments before. And I’d look at that and I’d go, “There are people that aren’t dealing with this as well as I am”. And if that happens to them, it’s going to set them back so much further.

And so for me, it comes back to acceptance. If they get it out of their system with me and I can handle it, then it will make it easier for that next person that’s walking down the street, maybe that person won’t stare at them. Or maybe that person will, you know, have gone, “Okay, I’ve seen someone that looks like that now”. So for me, it’s trying to make it more common for other people, so that (for), you know, other people with alopecia, it’s not a bigger thing. Like, people have seen more and more people. It’s that whole, you can’t be what you can’t see kind of thing.

And I think so many people with this condition, cover up or hide it. And if we had more of us out there looking and just wearing it proudly and just being themselves, then it wouldn’t be such a big thing for the kids that are coming up that are, kind of going, “Oh, you know, do I have to wear a wig? Do I have to do this?” It’s just about making it easier for the next generation following.

Naomi Creek  11:16

So it’s really just normalising or trying to normalise the condition, so there aren’t those stares and uncomfortable situations for you and others living with it.

Katie Hale  11:25

Yeah, exactly, exactly. You know, I want to see more of us out there so that it’s a bit more, you know. I remember being on an escalator at a shopping centre and I heard this little boy, and he was going the opposite direction. And he’s like, Mum, Mum, look at that lady”. And as I was looking over, he’s like, “She looks like you”. And it was actually someone in the community and we’d never met before. But it was his mum and we were both, just like, locked eyes as we were going up and down the escalators. But that was really cool. He was so excited that someone looked like his mum.

And that’s exactly what it is. It’s like you want to see more people and that excitement. And it’s that thrill of going, “Oh, like there are more people out there like me, I’m not so isolated in this situation, as I think I might be”.

Naomi Creek  12:06

Fantastic. And so do you think going bald and showing your raw self, is that part of being empowered to speak out? Does that help you?

Katie Hale  12:14

Yeah, definitely. When I was diagnosed, a lot of the things that helped me process what was going on was writing about it. And I wrote a few media articles and speaking about it. And it is empowering because you understand why someone is the way they are, like when they share their story. And so I do feel very empowered by being able to do that.

And, you know, I hope that it makes a difference. I feel like it does it, you know, or it has before. I think it’s really important that people,- ’cause there are so many common threads among each of us that have got this condition – just being able to hear that and, like you said before, it normalises it. It makes you feel less alone because that shared experience is a really strong one.

Naomi Creek  12:52

Yeah, and have you tried wigs or have you made a conscious decision not to wear a wig for that reason – the awareness?

Katie Hale  13:00

Look, to be honest, at the start wigs terrified me, absolutely terrified me. And because I felt like that wasn’t being true to myself. I felt like I was hiding a part of me and that, actually, I felt more self-conscious, being in a wig, or even just the thought of putting a wig on, I would feel more self-conscious about that than just looking the way I do.

So I do have a couple of wigs and most of them are just for fun, like I’ve got, you know, like a kind of pinky purpley coloured one, I’ve got a blonde one. And sometimes it’s just nice just to blend in and not stand out. Or you know, it’s a bit of fun, like going out, you know, dressing up. And you want to look differently because you know, a big part for women about when they get dressed up for an event or going out is getting your hair done.

And so, for me, I felt like a part of that was missing, I felt a bit naked or I felt a bit like I just wasn’t dressed up as much as I’d like to be. And so it’s those situations where I might pop one on. To be honest, usually by halfway through the night I get sick of it a whip it off anyway. And so I’m carrying around a piece of hair, but I think they give a lot of people a lot of options.

And I think there are some amazing wigs out there. I haven’t worn mine pretty much since pre-pandemic just because I just got out of the rhythm of it. I usually only wear it in winter for a bit of fun or if I don’t feel like wearing a beanie and it’s just a little bit warmer. But yeah, I think there are some great options and it’s, you know, each to their own and whatever makes you feel comfortable. You could have a different hair color every single day of the week or a year if you wanted to. It’s a great option.

Jo Burch  14:25

I like how you talk about that. Katie, I feel like Naomi and I can really I guess, sense kind of your fun and your enjoyment when you’re talking about wigs and how you’ve been able to embrace your alopecia and go okay, “If I want to wear a wig, I can but I can, sort of, make it an enjoyable experience”. Katie, would you mind telling us a little bit more around what lessons you have learned from others living with alopecia and from being involved in raising awareness?

Katie Hale  14:50

I don’t know where to begin with that one. There are so many things that I’ve learned. I think for me, one of the most memorable ones was at the foundations Kids Camp to see all different kids just coming together and having that shared connection. Like, it’s so empowering and so heartwarming, just to see them so comfortable. Like, and it was, you know, you saw these kids coming out of their shell more and more as the weekend went on.

That, for me, was was such a rewarding experience. It really cemented just how great the foundation is and how valuable their work is. And just it changes lives — those little things like their core memories for those kids — where they suddenly see people that look like them. They probably go to school and never see kids that look like them and then, suddenly, they’re surrounded by kids, that all look like them, you know, I don’t know how to phrase it. That was a really, really valuable experience in terms of the lessons.

I think it’s also accepting that every single person is at a different part of their journey and acceptance with the condition. People have had some really bad experiences, like, particularly the women, in the 10 or 20 years older than what I am. And some of the experiences that they’ve had, it made me really appreciate how well I, kind of, had it when it did happen.

Like, I’ve heard some really awful stories about different medication trials. How people have been treated. How, you know, they’re still too scared to ever leave the house without a wig on or to have people like their closest loved ones, see them without a wig.

And just meeting people where they’re at. Everyone’s had a really different journey. So, for me, that’s been a really big lesson in not necessarily being quick to judge, but just really taking that time to sit there and hear people out and hear how they’ve handled it and how they’ve been shaped by their experiences. And you can see why people choose to hide it. For me, it was never even a thought to hide it. But for them, it’s the complete opposite. And to be able to understand those different backgrounds and different reasons. That’s been a really big lesson.

Jo Burch  16:47

Naomi, I actually met Katie at the kids camp she’s referring to and, personally, I would say it was the start of my alopecia journey. And as Katie said, everyone’s alopecia areata is very different. My hair was growing back at that point in time as I had started medication.

But Katie was reflecting on the experiences of the children. i would actually reflect on my experience in meeting Katie. I felt like that was really, really powerful for me, to see someone, in my mind, so confident and so open and vulnerable. Because at that point, I was like, “Don’t tell anyone”. I hadn’t even spoken about it. Where I came to this camp as a volunteer and, I think, took away just as much as the kids did. So that was really special for me.

Naomi Creek  17:28

That’s wonderful. I think I can relate a little bit, just briefly, with my own life with rheumatoid arthritis and wanting to hide that as a child growing up with it. And when I, you know, got into adulthood, I did find a support group. And suddenly, I wasn’t alone. And I actually started wanting to talk about it and help others and listen and learn from others. So I think you’re definitely right, that everyone’s at a different part of their journey. But we can always learn from someone in those situations.

Katie Hale  17:55

That’s the thing, I think, as well. It’s the feedback that you get. I remember the first time, just after I was diagnosed, I went to a bit of a catch up when I was still living in Sydney. And it was the first one that I’d been to with people that also had the condition. And one of my little cousins, who was in primary school, there was a boy at their school who also had alopecia. And so they knew about the condition and he was head to toe like I am.

And I remember getting to — it was a picnic, and I couldn’t find where I was going — I just was looking for people that looked like me. And I wandered around for about 10-15 minutes and then I finally figured out the group then. It was because everyone, you know, had wigs and caps on and hats and scarves and everything.

And so I kind of went into that going, I thought I’d see people that looked like me and I didn’t and I remember being a bit frazzled by that. But this little boy was there with his mum as well. And I had feedback come through my auntie that, you know, he was so excited to see someone that looked like him that was there because he had the same feeling. You know, no one there looked like him until I showed up and that was one of those little moments that made me go, “Okay, I’m on the right path here”. I’m you know, that’s exactly why I want to do it. Because you want to see people that look like you and being able to have that little shared experience. It was really lovely.

Naomi Creek  19:09

What a wonderful story, Katie. Is there anything else that any things you’d love to share with the listeners that we may not have touched on today?

Katie Hale  19:18

I think it’s just having that confidence to be comfortable in what you’re doing in the sense that, like, if you’re, you know, wearing wigs and you’re starting, wanting to, kind of, do that less or, you know, go bald or one of those little things. You don’t have to jump headfirst into it. Like, you can dip your toes in the water and you go at the speed that you’re comfortable with. Like, don’t feel like you have to go one or the other all the way like there are so many different little things that you can do and build that confidence and just take those baby steps, because if you’re not comfortable in what you’re doing, it’s going to make that journey a lot harder. Or, you know, like, you don’t have to, like I said, dive headfirst into it.

It’s just doing things at your own pace and testing things and some days you willl feel a bit uncomfortable, or you may not love what you’re doing, or you may feel extra self-conscious. But you know, it’s part of the journey and we’ve all been through it at different phases, even though, you know, you might come across as really confident or you still have those days as well.

And I think that’s really important to accept that it’s not all smooth sailing every day. And that doesn’t have to be. You can have those, you know, ups and downs, but still be making progress on that path to acceptance, whatever that looks like for you.

Naomi Creek  20:25

Yep, I totally understand, Katie. So on that point, I wanted to ask you one last question. What is your message of hope for others starting on their journey with alopecia?

Katie Hale  20:35

It won’t be as scary and awful as what those first few days are. It won’t stop you from doing what you’re doing unless you let it stop you. So push yourself out of that comfort zone a little bit, speak to others. Find that support around you, because the people that are around you, are what, is what’s going to help you get through that and be really open and honest. And if you’re having a terrible day, then say that because there’s no point hiding that and hiding away with it.

If you get it out there and you talk about it, and you’re even, you know, going to see a therapist, work with people because it will get better. It always does. Like what Jo was saying, you’re meeting people at different parts of their journey. So you’ll get more confident in what you’re doing and you’ll become more comfortable in your own skin. Even though it may not seem like it in those first couple of days or couple of weeks and you’re unsure of where things are at. You know, get out there, find some information, arm yourself with all those resources that are out there through the foundation. It will get better.

Naomi Creek  21:33

Amazing advice. Thank you so much, Katie, for joining us today and we wish you well and keep empowering all those living with alopecia. Thank you.

Katie Hale  21:43

Thanks so much for having me.

Naomi Creek  21:47

And that brings us to the end of this episode. We hope the stories, insights, and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Jo Burch  21:57

Living with alopecia areata is more than just about hair. It’s about resilience, identity, and community. And together we’re building that community one story at a time.

Naomi Creek  22:08

This podcast was made possible with support from Pfizer, Australia.

Jo Burch  22:12

If our words resonated with you, please take a moment to rate us, leave a glowing review, and share this podcast with your friends, family, and networks. Every share amplifies our voice and help someone out there feel understood. If you have any questions, comments, episode topics, you can email us at [email protected].

Naomi Creek  22:36

Until next time, remember whether you’re on the path of acceptance, seeking treatments, or anywhere in between, we’re with you From Hair to There.

Narrator  22:48

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Aya Fujiwara 00:01

Welcome to “Life with Alopecia: Around the World,” a mini-series within the Global Healthy Living Foundation’s alopecia podcast series. In these episodes, we aim to connect patients, health care professionals, bridging gaps and sharing diverse alopecia areata stories from around the globe. We highlight the challenges and successes of living with alopecia areata, and remind you that you are never alone.

Aya Fujiwara 00:40

Hair loss isn’t just physical; it’s emotional, mental, and even spiritual. We are here to explore all aspects together.

I am Aya Fujiwara, Japan Lead at the Global Healthy Living Foundation ( GHLF), and your host for this episode.

Aya Fujiwara 01:00

At GHLF, we believe that every alopecia areata patient has a unique story, and by sharing them we can inspire, motivate, and uplift each other in the alopecia community.

Aya Fujiwara 01:18

. Whether you’re a patient, a caregiver, a medical professional, or someone seeking health knowledge, this podcast is for you! So tune in, and let’s embark on the journey to learn more about life with alopecia around the world!

Today, we are joined by Akiko Yamazaki of the Japan Alopecia Areata Foundation, who is here to talk about life with alopecia areata in Japan.

Thank you, Ms. Yamazaki, for taking time out of your busy schedule today.

Ms Yamazaki 01:55

My pleasure.

Aya Fujiwara 01:57

Could you briefly introduce yourself and tell us about the journey that led you to lead an alopecia areata patient organization in Japan?

Ms. Yamazaki 02:06

I am Akiko Yamazaki, the secretary of the Non-Profit Organization Alopecia Areata Patients’ Association, Since 2000, the company I worked for had been sponsoring the patients’ group at that time (the Association for Alopecia Areata), and as the person in charge of the patients’ group, I have provided various kinds of support, including taking care of patients.

When the  president of the association passed away suddenly,  I provided full support to the association as well as administrative duties for several years until the next president was appointed. During that time,  I thought about the mental state of the patients, I realized that it is difficult for them to engage in regular activities and that they need support in all situations. The mental damage caused by the disease is so vast I felt and implemented the close emotional support for patients.

Aya Fujiwara 02:56

Ms. Yamazaki, you have been active for a very long time.

Ms. Yamazaki 03:01

Yes I have.

Aya Fujiwara 03:03

How is alopecia areata generally perceived in Japan? What are some of the common ideas and views related to alopecia areata? Has any of it changed?

Ms. Yamazaki 03:11

In Japan, where the society is based on appearance, hair plays such an important role that a woman’s appearance is synonymous with her beautiful hair. Patients with intractable alopecia areata often face discrimination from the first meeting in various social activities such as finding a job, so it is no exaggeration to say that having beautiful hair is essential. Baldness and obesity were also causes for women to look down on men.

Ms Yamazaki 03:39

Recently, some female patients have begun to see skinheads as part of their personality and find beauty in themselves,  and this is a very welcome development, as more and more people are thinking about looking on the inside. However, even today, when a university survey is conducted on appearance to recruiters for employment, hair loss is a very low point, and it is surprising that people’s awareness has not changed much even though times have changed. Comedy and other forms of entertainment still make baldness the subject of laughter, and there is no end to the number of such consultations and complaints coming to the association.

Aya Fujiwara 04:19

Do you feel that the name of this disease in Japanese which is , “Round baldness” , is somehow unacceptable in society?

Ms. Yamazaki 04:28

Yes, there are many comedians who wear such wigs in their performances. I am always tense about the word “baldness”.

Aya Fujiwara 04:57

 I understand that in Japan, patients may face unique social challenges with regard to symptoms that affect their appearance. Please tell us about the challenges that patients with alopecia areata encounter in Japan.

Ms Yamazaki 05:14

It depends on the age of onset. It is not uncommon for children to not want to go to kindergarten or  school because of the hurt they feel from the mindless words of other children who are curious about their condition. People stare at you if you are anywhere to be seen, which leads to low self-esteem, making it difficult for them to socialize, join new groups or gatherings. The onset of the disease after puberty is even more damaging, and since the patient has some social experience, he or she often compares his or her appearance with others, feels anxious and that leads to their  harsh behaviour with their family, friends, and others around,  and these struggles often lead to self-denial, which can also have a significant impact on schoolwork. Onset of working adults, sudden hair loss, anxiety and fear about treatment, anger for no reason, and other feelings that one cannot control. They try to live their lives while praying for a quick healing while resorting in the use of wigs and other means. It would be nice if they had a family member or close friend that they can talk about it with, but they cannot find anyone with the same disease, and they are unable to ask for help. Most of them use wigs, but the high cost, fear of being discovered, restrictions on their activities, and difficulty in taking care of their wigs, as well as the emotional pain of deceiving others with their wigs, do not help them feel better. The only help is friends and family with whom they can talk openly, but when we survey patients, there are always those who do not want to tell even their family members. When I talk with patients, I try to listen attentively and let them tell me their thoughts and feelings.

Aya Fujiwara 06:52

It is a very painful disease, no matter what age it strikes.

Ms. Yamazaki 06:57

Yes, it is.

Aya Fujiwara 06:58

We would also like to know more about how your organization is tackling these issues.

Ms. Yamazaki 07:09

Yes, we organize as many exchanges as possible between people with the same disease. We hold seminars twice a year where doctors give lectures on the latest treatments, We also go out and interact with people in remote areas if they cant reach us, we hold social events via Zoom so that we can connect with members from all over the country. It becomes imperative for us to hold gatherings so that parents of children with Alopecia do not feel alone. Talking to others with Alopecia comforts and eases their mind and mental.  It has also been proven that the way you feel and live can be changed by the way you look and feel, so we also conduct makeup classes during seminars and accumulate data on clinics where people can receive art makeup with peace of mind. We  also  involve nurses who understand this disease.

Aya Fujiwara 08:00

I think that there are many things that we can share and support each other who share the same disease.

Ms. Yamazaki 08:08

Yes, I think it is the best medicine or more than medicine.

Aya Fujiwara 08:13

As a parent myself, I can only imagine the pain if my child developed this condition, it must be very difficult.

Ms Yamazaki 08:21

Yes, the most common case is that they don’t know how to support their child, and they can’t find anyone around them because they are all hiding it, so the first step is to go and find resources  from the Internet.

Aya Fujiwara 08:38

I think the basic premise of Japan is to hide the disease,  isn’t it?

Ms. Yamazaki 08:42

Yes, it is very difficult to be open about it, and it is very difficult to hide it, and to keep people from noticing it.

Aya Fujiwara 08:55

What efforts are being made to increase awareness and understanding of alopecia areata among the general public and medical professionals?

Ms. Yamazaki 09:06

The current situation is very unfortunate, because medical professionals only provide treatment. However, the president of the patients’ association, the board members, the secretary, and the cooperating doctors, all of whom have deep insight into alopecia areata, inform patients of the existence of the association, send the newsletter published by the association four times a year, and inform patients of every event.

Ms Yamazaki 09:31

On our website, we provide easy-to-understand explanations and information about our activities so that anyone can learn about the disease alopecia areata. I believe that these efforts will lead to a wider awareness of the disease.

Aya Fujiwara 09:45

Doctors only provide treatment, and no support at all for their mental health, employment, and life changes?

Ms. Yamazaki 09:57

No,  it is difficult for them to provide mental support. We often consult with people who are doing clinical work on this matter to deepen the understanding and support.

Aya Fujiwara 10:10

In interviewing people around the world for this podcast, we came across many stories that emphasize the importance of resilience and community support when living with alopecia. Have you witnessed or experienced anything similar?

Ms. Yamazaki 10:33

Yes, I have. At seminars and social gatherings, patients who meet each other for the first time will have conversations with tears streaming down their cheeks. Afterwards, I witness  a refreshed look on their faces and a friendly expression as if they have been friends for 10 years. Seeing this, I recognize the importance of creating opportunities for exchange, and I believe it is one of the major missions of our association.

Aya Fujiwara 10:56

It is easy to feel lonely, isn’t it? I think it’s a good thing that we are not alone in this kind of disease.

Ms Yamazaki 10:59

Yes, I agree. You mentioned earlier that we are not alone, and that is exactly what we are trying to convey.

Aya Fujiwara 11:08

I really feel the importance of the community.

Ms. Yamazaki 11:14

Yes, I do too.

Aya Fujiwara 11:15

Last but not least, If there were one word or phrase that could describe your hope for the future regarding the treatment, awareness, and support of alopecia areata patients in Japan and around the world, what would it be?

Ms. Yamazaki 11:32

In Japan, the year before last, the Jak inhibitor was launched and has shown some efficacy. However, it is not yet a drug that every patient can access, and there are conditions for effectiveness, so a complete cure is still difficult to achieve. Under such circumstances, I guess the phrase I would consider is “alopecia areata has become a curable disease”.

Aya Fujiwara 11:54

That’s right. That is really the best we can hope for. But before we reach that point, I hope that we can work together like this to create a truly deep and warm-hearted community where patients can support each other, and the world can be connected.

Ms. Yamazaki 12:11

Yes, I really do. That’s what I really think.

Aya Fujiwara 12:14

Thank you very much for giving me this opportunity to speak with you today.

Ms. Yamazaki 12:18

Thank you very much for your time.

Aya Fujiwara 12:21

Ms. Akiko Yamazaki from Japan Alopecia Areata Foundation,  Thank you very much.

Ms Yamazaki 12:28

Thank you very much.

Aya Fujiwara 12:31

And that brings us to the end of this episode of “Life with Alopecia: Around the World.” We hope the stories, insights, and voices we’ve shared have touched you, educated you, and made your journey a little brighter.

Living with alopecia areata is more than just hair;

it’s about resilience, identity, and community. And together, we’re building that community, one story at a time.

If our words resonated with you, please take a moment to rate us, leave a positive review, and share this podcast with your friends, family, and networks. Every share amplifies our voice and helps someone out there feel understood.

You can find other episodes about life with alopecia around the world on this playlist or on our landing page. And if you have any questions, comments, or episode topic ideas, you can email us at [email protected]

And remember: whether you’re on the path of acceptance, seeking treatments, or anywhere in between, we’re with you on your journey through life with alopecia.

Aya Fujiwara 00:01

「円形脱毛症とともに生きる世界編」へようこそ。グローバルヘルシーリビングファンデーションの円形脱毛症ポッドキャスト“Life with Alopecia” のミニシリーズです。このシリーズでは、世界中の様々な円形脱毛症のストーリーを共有することで、患者さんと医療従業者を繋ぎ、溝を埋めることを目的としています。円形脱毛症とともに生きる、ということのチャレンジ、そしてサクセスに焦点を当て、決してあなたは1人ではないということを思い出してください。

Aya Fujiwara 00:40

脱毛とは、身体的だけではなく、感情的、精神的、そしてスピリチュアルなものでさえあります。私達はここであらゆる側面を一緒に探求していきます。グローバルヘルシーリビングファンデーションのジャパンリードの藤原彩です。

Aya Fujiwara 01:00

GHLFでは、円形脱毛症の患者さんには、それぞれのユニークなストーリーがあり、それを共有することで、円形脱毛症コミュニティの中でお互いを刺激し、モチベーションを高め、アップリフトすることができると信じています。

Aya Fujiwara 01:18

このポッドキャストは、あなたが患者であれ、介護者であれ、医療関係者であれ、健康知識を求めている人であれ、あなたのためのものです。このポッドキャストを聞いて、世界中の円形脱毛症の患者さんの生活について学ぶ旅に出かけましょう。

本日は、特定非営利活動法人円形脱毛症の患者会から山崎明子さんのお話を伺っていきましょう。山崎さん、本日はお忙しい中ありがとうございます。

Ms Yamazaki 01:55

いいえ。

Aya Fujiwara 01:57

では早速ですが、簡単な自己紹介と、山崎さんが円形脱毛症の患者会を率いるに至った経緯についてお話しいただけますでしょうか？

Ms Yamazaki 02:06

はい。私は、特定非営利活動法人円形脱毛症の患者会、事務局の山崎です。2000年から勤務先の企業が当時の患者会、円形脱毛症の考える会を後援していたため、患者会の担当として、患者さんのお世話など、様々な支援をしてきました。その後、当時の会長が急遽され、次の会長が決まるまでの数年間は、事務局の業務の他、患者会を全面的にサポートしておりました。その中で、患者さんのメンタルを考えたとき、進んで活動を行うことは難しく、あらゆる場面でのサポートが必要であること、個人として考えられないほど病気による精神的なダメージが大きく、寄り添いながらの患者会活動が必要であると感じ、実行してきました。

Aya Fujiwara 02:56

ありがとうございます。本当に活動歴がすごく長いんですね。山崎さんは。

Ms Yamazaki 03:01

はいそうですね、はい。

Aya Fujiwara 03:03

円形脱毛症にまつわる一般的な考え方や見え方っていうのはどういったものですか、変化ってありましたか。

Ms Yamazaki 03:11

はい。見た目社会の日本では、女性イコール綺麗な髪が見た目の代名詞となるほど髪は大きな比重を持っています。難治性の円形脱毛症患者は、就職を初めとして、様々な社会活動の中で初対面から差別されることも多く、綺麗な髪は必須と言っても過言ではないほど、辛い思いをしてきました。男性によっても「ハゲと肥満」が女性から低く見られる原因となっていました。

Ms Yamazaki 03:39

最近は女性の患者さんでも、スキンヘッドも自分の個性と捉え、美を感じる方も現れており、内面で見ようとする考え方も増えてきていることから、とても喜ばしいことではあります。しかし現在も大学の調査で、就職にあたって採用担当者に容姿についてのアンケートを行っても、脱毛はかなり低いポイントであり、時代は変わっていても、人々の意識はあまり変わっていないことに驚かされます。お笑いなど、未だにハゲを笑いの対象とすることもあり、会へもそのような相談や、講義は後を絶ちません。

Aya Fujiwara 04:19

円形脱毛症っていうこの病気の名称が何か社会で受け入れられないところがあると感じますか。

Ms Yamazaki 04:28

そうですね、こう円型に一つだけ抜けるような円形脱毛症これは本当にお笑いなどでもよくそういったあのカツラをかぶって出てくる芸人さんもおりますし、ただ私達の会は難治性の円形脱毛症の会で、頭部全部脱毛、全身の体毛までなくなってしまうような患者さんが多いので、いつもそのハゲという言葉にはピリピリした生活を送っています。

Aya Fujiwara 04:57

ありがとうございました。日本では外見に影響を与える症状に関して、社会的にユニークな問題に直面することがあると理解しています。円形脱毛症の患者さんが日本で遭遇する課題について、どんなことがありますか。

Ms Yamazaki 05:14

はい。発症する年齢により大きく変わります。幼少の頃は子供同士の物珍しさからくる心無い言葉に傷ついて、幼稚園、学校に行けなくなり、引きこもりがちになることは珍しいことではありません。外にいるだけで周りの、心まで刺すような視線を浴び、自己肯定感を失い、知らない人の集まりやグループには入りにくくなります。思春期以降の発症はさらに傷つくことが多く、ある程度の社会経験もあるため、自分の容姿を他人と比べ、家族や友人等、周りの人につらくあたったり、葛藤との闘いは自己否定に繋がることも多く、学業にも大きな影響が見られます。社会人の発症、突然の脱毛で治療に対する不安や恐れ、理由のない怒りなど、自分でどうしようもない感情を。早い治癒を祈りながらウイッグの使用などで抑えながら生活しようとします。家族や親しい友人がいればいいのですが、同病の人も見つけられず、相談もできず、そうした方が会に相談してこられます。ほとんどの方がウイッグを使用していますが、思いのほかの高額、ばれることの恐怖、行動に制限がある、手入れが大変等の悩み、またウイッグで人を欺いているという心の痛みに、心が晴れることはありません。心を割って話せる友人や家族の存在が唯一の救いになりますが、患者にアンケート調査を行うと、家族にも伝えたくない方が必ずいらっしゃいます。患者さんとお話させていただくときは、ひたすら傾聴に徹して思いの丈を話していただくように心がけます。

Aya Fujiwara 06:52

どの年齢で発症しても、とてもつらい病気ですよね。

Ms Yamazaki 06:57

そうですね。

Aya Fujiwara 06:58

そういった人たちが山崎さんのこの団体にたどり着いて、この課題をどのように取り組んでいらっしゃるのか、そこもうちょっと詳しくお聞かせください。

Ms Yamazaki 07:09

はい。同じ病気の方同士の交流をできるだけ多く企画しています。年に2回のセミナーで医師の最新の治療の講演とともに、交流の機会を作っています。また、問題のある地域はこちらから出かけて交流しますし、全国の会員さんと繋がれるように、Zoomでの交流会も実施しています。お子さんを持つ親御さんが孤独にならないように、集まりを行うことは必須になります。心の解放は同病の方同士が話し合うことに尽きます。また、見た目の整容で心持ちや生き方が変わることも実証されていますので、セミナー時にメイクの講習をしたり、安心してアートメイクが受けられるクリニックのデータも積み上げています。この病気に理解のある看護師さんを巻き込んでの活動も企画しています。

Aya Fujiwara 08:00

この同じ病を持っている者同士、通ずるものというかすサポートできることってたくさんありますよね。

Ms Yamazaki 08:08

そうですね、一番お薬以上の特効薬だと思います。

Aya Fujiwara 08:13

いやでも、私も母として、もし自分の子供がってなったときに、親としても大変な病気ですよね。これって。

Ms Yamazaki 08:21

そうですね、まずどうしてサポートしていいかわからず、周りにそういった方も皆さん隠していらっしゃるので見つけることができませんので、最初はまずネットからデータを取るところから始まるっていうのが一番多いケースです。

Aya Fujiwara 08:38

日本はあの、隠すっていうことがもう大前提にあるっていうわけですね。

Ms Yamazaki 08:42

そうですね、本当にオープンにできずに、もうひたすら隠し、また周りの方に気付かれないようにする、そういったあの気持ちの負担をとても大きいものになっています。

Aya Fujiwara 08:55

一般の人々や医療従業者の間で、この円形脱毛症に対する認識や理解を高めるためにどんな取り組みが、あの日本ではなされているんでしょうか？

Ms Yamazaki 09:06

はい、現状はとても残念ですが、医療者イコール治療ということになってしまいます。しかし、患者会の理事長を始め、理事、幹事や協力医師など、円形脱毛症に深い見識を持ちの先生方は患者さんたちに患者会の存在を告知してくださったり、年4回、会で発行している会報をお送りしたり、イベントの都度お知らせしています。

Ms Yamazaki 09:31

ホームページでは、誰でも円形脱毛症という病気を知ることができるように、わかりやすい説明と活動についてお知らせしています。こうした積み重ねが広く病気の周知に繋がると考えています。

Aya Fujiwara 09:45

医療従業者っていうのは治療のみで、そういった心のことだったり、その他のサポート、就職だったり、そういったものはほとんどないっていうことですね。

Ms Yamazaki 09:57

そうですね、メンタル面のサポートは難しいです。よくそういったご相談もお受けするので、こちらで知り合いの臨床されている方たちにご相談をしたり、そういったこともあります。

Aya Fujiwara 10:10

このポッドキャストのために世界中の人々にインタビューをしている中で、この円形脱毛症とともに生きる際のレジリエンスという忍耐強さだったり、コミュニティのそのサポートの重要性を強調する多くのエピソードに出会ったんですけれども、日本でもそういったことを目撃したり、経験したことはやっぱりありますか。

Ms Yamazaki 10:33

はい。セミナーや交流会で初対面の患者さん同士が、もう本当に涙を流しながら会話をされます。そしてその後、すっきりした表情と、もう10年来の友人にあったような親しげな表情がいつも心に残ります。こうしたことを見るにつけ、交流の機会をつくることの大切さを認識し、会の大きな使命の一つだと考えています。

Aya Fujiwara 10:56

孤独になりがちですよね。こういった病気は。

Ms Yamazaki 10:59

はい。先ほど1人ではないとおっしゃってくださいましたけれど、まさに私達は1人ではないということをお伝えしながら活動をしています。

Aya Fujiwara 11:08

うん。いや本当にそのコミュニティの大事さがとっても身にしみますよね。

Ms Yamazaki 11:14

はい

Aya Fujiwara 11:15

最後になるんですけれども、日本や世界の円形脱毛症患者さんの治療、認識、そしてサポートに関して、山崎さんの将来の希望を表す言葉やフレーズがあるとしたらそれはどんな言葉でしょうか？

Ms Yamazaki 11:32

はい。日本では一昨年、ジャック阻害剤が発売され、一定の効果が見られるようになりました。ただしまだ誰でも使用できる薬ではなく、効果を得るための条件もあるので、まだまだ完治は難しいと思われます。そんな中、私が考えるフレーズは、「円形脱毛症は治る病気になった」ということでしょうか。

Aya Fujiwara 11:54

そうですよね。それが本当に一番の望みですよね。でもそこにたどり着く前にはこうやって皆さんで力を合わせて、患者同士をサポートできる、そういった本当に深い、世界も繋がる、そういった心温かくなるコミュニティを作っていきたいですね。

Ms Yamazaki 12:11

はい。本当にそう考えております。

Aya Fujiwara 12:14

今日はこうやってお話できる機会をいただき本当にありがとうございました。

Ms Yamazaki 12:18

こちらこそ聞いていただいてありがとうございました。

Aya Fujiwara 12:21

円形脱毛症の患者会の山崎明子さんにお越しいただきました。どうもありがとうございました。

Ms Yamazaki 12:28

ありがとうございました。

Aya Fujiwara 12:31

「円形脱毛症とともに生きる世界編〜JAPAN〜」はいかがでしたか。私達が共有したストーリーが感動をもたらし、知識となり、あなたのジャーニーを少しでも明るいものにしてくれたら幸いです。円形脱毛症とともに生きるということは、単なる髪の問題ではありません。

Aya Fujiwara 12:53

私達は一緒に一つずつ物語、そしてコミュニティを築いているのです。もし私達の言葉に共感していただけたなら、このポッドキャストを友人や家族、ネットワークにシェアしてください。シェアするたびに、私達の声は広まり、どこかの誰かが理解されていると感じることができるのです。

Aya Fujiwara 13:17

このプレイリスト、またはランディングページで、世界中の円形脱毛症との生活に関する他のエピソードを見つけることができます。また、ご質問、コメント、エピソードのトピックのアイディアなどがありましたら、[email protected]までメールを送りください。あなたが円形脱毛症を受け入れる道を歩んでいようと、治療を求めていようと、そのはざまであろうと、私達はあなたの円形脱毛症との人生の旅に寄り添っていきたいという思いを忘れないでください