The Sjö
A Sjögren's Podcast
Real conversations. Shared experiences. A closer look at life with Sjögren's.
The Sjö (pronounced "show") is a podcast from the Global Healthy Living Foundation and CreakyJoints for anyone living with, caring for, or trying to understand Sjögren's disease.
Host Shilpa Venkatachalam talks with rheumatologists Dr. Priya Reddy and Dr. Dana DiRenzo and patient advocate Melissa Taylor, known as Autoimmune Auntie. Together, they share the medical facts and real-life experiences of living with Sjögren's.
Each episode answers a question many patients ask, with practical tips you can use right away.
Listen to the Series
Understanding the Disease
Episode length: 36:32
Understanding Sjögren's: What I've Learned Along the Way
“What's happening to me?” It's often the first question people with Sjögren's ask, and it can take years to answer. In this first episode of The Sjö (pronounced “show”), host Shilpa Venkatachalam of the Global Healthy Living Foundation talks with rheumatologist Dr. Priya Reddy and patient advocate Melissa Taylor, known as Autoimmune Auntie, about what Sjögren's disease is and how it's diagnosed.
What You'll Learn
- What Sjögren's is, and why “it's more than dryness”
- Common and less common signs to watch for
- Why diagnosis often takes so long, and how to keep pushing for answers
- How tracking your symptoms can help your doctor see the full picture
- How Sjögren's is managed, and why there's real reason for hope
Everyday Life & Coping
Episode length: 35:18
Living with Sjögren's: How Do I Get My Life Back?
Once you have a diagnosis, a new question comes up: how do you live with Sjögren's every day? In this episode of The Sjö (pronounced “show”), host Shilpa Venkatachalam of the Global Healthy Living Foundation talks with Dr. Dana DiRenzo, Chief of Rheumatology at Penn Presbyterian Medical Center and a member of the Penn Sjögren's Center, and patient advocate Melissa Taylor, known as Autoimmune Auntie.
In Episode 2 of The Sjö, Melissa Taylor and rheumatologist Dr. Dana DiRenzo talk about daily life with Sjögren's, from dryness and brain fog to mental health, and how to partner with your doctor to get your life back.
What You'll Learn
- How dryness can affect your whole body, and which specialists can help
- Why it's important to discuss tough topics like teeth, body image, and intimacy
- How to describe fatigue and pain more specifically, such as mental vs. physical fatigue
- When to seek mental health support, including therapy and support groups
- How to work with your doctor as a partner, starting with 2–3 goals for your next visit
Advocacy & Next Steps
Episode length: 29:53
Moving Forward: What Should I Do Next?
You have a diagnosis and you're learning to manage daily life. What comes next? In the final episode of this series of The Sjö (pronounced “show”), host Shilpa Venkatachalam of the Global Healthy Living Foundation talks again with Dr. Dana DiRenzo, rheumatologist at Penn Medicine and member of the Penn Sjögren's Center, and patient advocate Melissa Taylor, known as Autoimmune Auntie. Together, they talk about how to take charge of your care.
Dr. DiRenzo describes what a good Sjögren's care team looks like. Melissa shares how she “interviews” her doctors, why she treats appointments like a meeting, and how she learned which symptoms are worth tracking.
What You'll Learn
- Who belongs on your Sjögren's care team, and the role your rheumatologist plays
- How to make the most of a short appointment by bringing your top 2–3 concerns, filling out symptom questionnaires, and sharing recent lab results
- Where to find reliable information about Sjögren’s disease
- What's happening in Sjögren's research and clinical trials, and why there's real reason for hope
Host & guests
Shilpa Venkatachalam, PhD, MPH
Host
Shilpa Venkatachalam, PhD, MPH, is the Chief Patient Centered Research and Ethical Oversight Officer, as well as Co-Principal Investigator of CreakyJoints® “ArthritisPower,” the AR-Power Patient-Powered Research Network which is part of 20 Patient Powered Research Networks of the Patient Centered Outcomes Research Net. She manages several research projects including a collaborative research group called the Autoimmune Research Collaborative (ARC) and the GHLF ArthritisPower research registry.
More about Shilpa
More recently, Shilpa led a PCORI Dissemination Engagement Award on Chronic Pain and a collaborative project on understanding the concerns, behaviors and experiences of people living with autoimmune and rheumatic conditions during the COVID-19 pandemic, and a PCORI Stakeholder Convening Engagement Award titled “Vaccine Uptake Research in Autoimmune Disease: Multistakeholder Planning”. Shilpa is a co-author on peer-reviewed papers and abstracts, and has been invited to present her findings at international medical conferences.
Shilpa completed her undergraduate degree in Mumbai, before moving to the U.K. to complete a Masters in Literature at the University of Durham. She earned her PhD in Critical Theory at the University of Nottingham, U.K. She has worked as an academic in the U.K., the U.S. and in the West Indies.
Following significant life events that required navigating health systems as patient and as caregiver, she earned an Advanced Master’s in Global Health from New York University, during which she also won the prestigious Paul Ambrose Scholars Program fellowship awarded by the Association for Prevention Teaching and Research. She was among 25 chosen by The Young Persons Chronic Disease Network in collaboration with American Cancer Society and the Harvard Global Equity Center for The Global Cancer Advocacy Training.
Melissa Taylor
Patient advocate · Episodes 1, 2 & 3
Melissa Taylor, known to her online community as @autoimmuneauntie, is an actress, content creator, and Sjögren's patient based in North Carolina. Melissa first started having symptoms at age 20, but it took four years of being told it was “just anxiety” before she was finally diagnosed with Sjögren's disease.
More about Melissa
Along the way, she faced a kind of isolation that was both physical and emotional, carrying fears about her health that many people around her couldn't understand. Today, she uses humor and honesty to show that invisible symptoms don't mean an invisible illness.
Across Episodes 1, 2, and 3, Melissa shares her own experience living with Sjögren's disease, from the long road to diagnosis to the everyday realities of managing a condition others can't always see.
Dr. Priya Reddy
Rheumatologist · Episode 1
Dr. Priya Reddy is a Tampa Bay rheumatologist with more than 20 years of experience treating conditions like rheumatoid arthritis, lupus, and Sjögren's disease. She pairs medical care with a focus on nutrition, sleep, movement, and stress management.
More about Dr. Reddy
A past president of the Florida Society of Rheumatology and clinical trial investigator, she believes medicine begins and ends with the patient. She teaches and mentors future physicians, leads clinical trials as a principal investigator, and speaks at medical conferences around the world.
In Episode 1, Dr. Reddy shares what she's learned from years of caring for people with Sjögren's disease: how it's diagnosed, why it can take time to get answers, and what good, whole-person care looks like after diagnosis.
Dr. Dana DiRenzo
Rheumatologist · Episodes 2 & 3
Dr. Dana DiRenzo is a Professor of Clinical Medicine in the Division of Rheumatology at the University of Pennsylvania and Chief of Rheumatology at Penn Presbyterian Medical Center. She is a member of the Penn Sjögren's Center and directs Penn's Musculoskeletal Ultrasound program, which uses ultrasound imaging to take a closer look at joints, muscles, and tendons.
More about Dr. DiRenzo
Her clinical expertise includes Sjögren's disease, rheumatoid arthritis, myositis, and scleroderma. Dr. DiRenzo takes a whole-person approach to care. Alongside medical treatment, she helps patients build in exercise, anti-inflammatory eating, and mindfulness-based stress reduction to support their health day to day.
In Episodes 2 and 3, Dr. DiRenzo shares practical insight on what it really takes to manage the daily impact of Sjögren's disease.
The Sjö: A Podcast About Sjögren's Disease
The Sjö (pronounced “show”) is a podcast from the Global Healthy Living Foundation and CreakyJoints for anyone living with, caring for, or trying to understand Sjögren's disease.
Host Shilpa Venkatachalam talks with rheumatologists Dr. Priya Reddy and Dr. Dana DiRenzo and patient advocate Melissa Taylor, known as Autoimmune Auntie. Together, they share the medical facts and the real-life experience of living with Sjögren's.
Each episode answers a question many patients ask, with practical tips you can use right away.
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