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CreakyJoints Members Describe How Self-Advocacy Improved Their Arthritis Outcomes in Eight Testimonials Presented as Part of the Patient Perspectives Program of the American College of Rheumatology Convergence 2022

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CreakyJoints Members Describe How Self-Advocacy Improved Their Arthritis Outcomes in Eight Testimonials Presented as Part of the Patient Perspectives Program of the American College of Rheumatology Convergence 2022

PUBLISHED 11/8/22
JESSICA DAITCH – GHLF STAFF

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FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

Thirteen Additional Scientific Abstracts Accepted for Presentation

UPPER NYACK, NY (November 8, 2022) –  Members of CreakyJoints, the digital, arthritis patient community of the Global Healthy Living Foundation, were selected to present eight testimonials at the American College of Rheumatology’s Patient Perspectives Program, held concurrently at the American College of Rheumatology Convergence 2022 (Philadelphia, PA, November 10-14, 2022). Collectively, the eight poster presentations highlight how people living with chronic, autoimmune illness take control of their disease management by finding community, identifying health care providers who act as partners, and adding complementary therapies or management strategies to their regimen to improve disease outcomes.

During the ACR Convergence, CreakyJoints also will present one oral presentation, one session panel, and twelve additional scientific posters.

Two Patient Perspectives posters describe challenges members overcame to access high quality rheumatology care despite limited resources in their local area. In “Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment,” CreakyJoints member and elementary school teacher Vanessa Kerr reports that she developed rheumatoid arthritis (RA) in between the birth of her fourth and fifth children. However, in her local area, the rheumatologist was only available one day a week, making appointments difficult to schedule, plus the rheumatologist did not discuss treatment alternatives when Kerr didn’t respond well to her initial medication regimen. With encouragement from a family member, Kerr sought a new rheumatologist, who lived an hour from her home but offered more support in between appointments and worked with her to find an alternative treatment approach.

“I live in a rural area where there are no rheumatologists and the local hospital has closed. After I was diagnosed with RA, I quickly learned the importance of advocating for myself,” said Ms. Kerr. “Going to the doctor means taking off work and traveling some distance, which is why I prepare in advance by writing a list of all my concerns and bringing someone with me to provide support.”

Similarly, in “Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis,” CreakyJoints member Ashley Krivohlavek, who lives with psoriatic arthritis (PsA), reports that in 2020 she had been on an infused biologic for 18 months, but the dose wore off too soon and her disease activity was worsening. She was switched to an injectable biologic, but even though she felt little relief, her provider was reluctant to change medications again. Calling her area a “rheumatology desert” with alternative practitioners available only out of state, Ms. Krivohlavek proactively coordinated telehealth consultations with other rheumatologists and eventually identified a practice new to her area that employed nurse practitioners with a rheumatology specialization. This practice encouraged Krivohlavek to communicate about her PsA goals and to be an equal partner in shaping her care experience.

“Finding health providers who emphasize a collaborative approach to care is a priority for me,” said Ms. Krivohlavek. “Since 2021, my symptoms, particularly the constant fatigue, brain fog, and swollen joints have improved, and my life has become my own again. I restarted graduate school and now volunteer in health advocacy in my state. Advocating for myself improved my quality of life.”

In her poster, Krivohlavek describes her Guide to Collaborating with Your Provider and Guide to Changing Providers, which are patient communication principles based on her experience.

Quality of Life Improved Via Social Media Strategies

In “From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease,” CreakyJoints member Cheryl Crow (@arthritislife, TikTok) and Zoe Rothblatt, Associate Director, Community Engagement at CreakyJoints, discuss how their personal and professional friendship evolved over social media as they shared information for coping with their respective chronic conditions. While their initial focus on social media was to share personal experiences and evidence-based education, they soon realized that their social media handles’ (@zoerothblatt, Twitter) comments section contained valuable tools and strategies, creating a loop of shared information they could incorporate into their own lives.

“Our social media handles provide 24/7 access to the chronic illness community and their lived experience,” said Ms. Rothblatt. “Having this connection with others, sharing our ideas and in turn hearing about others’ experiences has changed the way we approach our health. For me, it has helped normalize my symptoms, meaning I feel less alone in coping with my condition. I also have more confidence speaking up at doctors’ appointments and managing my condition with the support of my online community.”

“I feel less alone and more emotionally supported when I share my arthritis journey with my online community,” said Ms. Crow. “Many times, comments have led me to try new techniques or gadgets to make living with rheumatoid arthritis easier.”

CreakyJoints Posters Accepted into the Patient Perspectives Track:

Scientific Posters by CreakyJoints at the ACR Convergence 2022:

About Creakyjoints

CreakyJoints® is an international digital community for millions of arthritis patients and caregivers who seek education, support, advocacy, and patient-centered research. We represent patients in English, Spanish, and French through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,700 trained volunteer patient, caregiver, and provider health care activists.

Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational peer-reviewed research. In addition to online and downloadable educational resources, CreakyJoints publishes many arthritis and chronic disease podcast series, available on all major streaming platforms, that provide both patient and provider perspectives. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information, visit CreakyJoints.org.

Find us online:

Global Healthy Living Foundation: ghlf.org

CreakyJoints Canada: CreakyJoints.ca

CreakyJoints: CreakyJoints.org

CreakyJoints Español: CreakyJoints.org.es

CreakyJoints Australia: CreakyJoints.org.au

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

Global Healthy Living Foundation Podcast Network: https://ghlf.org/patient-education/listen/

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research in English and Spanish through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 46,000 subscribers. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, eRheum (eRheum.org), for telehealth and virtual-care support, and a constantly refreshed library of podcasts via the GHLF Podcast Network. Visit ghlf.org for more information.

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