Collaborative Advocacy Helps Me and Other Patients With Relapsing Polychondritis (“RP”’) / My life improved by helping the RP Foundation and Race for RP facilitate awareness, education, and research to improve the quality of life for patients with RP and advance a cure for this disease.

Michael Linn¹ and Dan Smith², ¹Relapsing Polychondritis Foundation, New York, NY, ²Relapsing Polychondritis Foundation, Canton, MI

Meeting: ACR Convergence 2021

Keywords: autoimmune diseases, cartilage, Cartilage Degradation, Community programs, education, patient

Session Information

Date: Sunday, November 7, 2021

Title: Patient Perspectives Poster (PP01–PP09)

Session Type: Poster Session B

Session Time: 8:30AM-10:30AM

Background/Purpose: In March 2020, I was diagnosed as having relapsing polychondritis (“RP”), an understudied, underdiagnosed, and undertreated debilitating autoimmune disease that can be fatal if left untreated. The disease affects multiple organ, particularly cartilaginous structures such as the ears, nose, airways, joints, as well as the eyes, skin, heart valves, and brain. The cause of RP remains unknown, and consequently, there is not a diagnostic test or targeted treatment options for patients with RP.

Intervention: Since the early stages of my diagnosis, the RP Foundation (www.polychondritis.org) has continued to be a tremendous resource. Soon after my diagnosis, they provided educational materials and introductions to RP experts and an online RP support group. The RP Foundation also connected me to Race for RP (www.RaceForRP.org), which supports research, awareness programs, and care for those who are affected by RP.

From these connections, the importance of working as a team became particularly clear. Celebrating the successes and supporting teammates through the losses applies to sports, managing patient care, conducting research programs, and educating others about autoimmune diseases.

Maintenance: While fighting RP, I was inspired by the RP advocates that I met. So, I volunteered to be the primary liaison between the leading RP social media platforms (including the RP Foundation and Race for RP) and a large, private online support group.

Quality of Life: My life has been significantly improved by being part of a successful team whose purpose is to facilitate awareness, education, and research to improve the quality of life for patients with RP and advance a cure for this disease. It provides me with the opportunity to help others and be excited about the extraordinary advances in patient care and cutting-edge research. I enjoy being an active and helpful member of a successful team.

Dan & Debbie Smith with Race for RP car

Race for RP

Relapsing Polychondritis Foundation

Disclosures: M. Linn, None; D. Smith, None.

To cite this abstract in AMA style:

Linn M, Smith D. Collaborative Advocacy Helps Me and Other Patients With Relapsing Polychondritis (“RP”’) / My life improved by helping the RP Foundation and Race for RP facilitate awareness, education, and research to improve the quality of life for patients with RP and advance a cure for this disease. [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 9). https://acrabstracts.org/abstract/collaborative-advocacy-helps-me-and-other-patients-with-relapsing-polychondritis-rp-my-life-improved-by-helping-the-rp-foundation-and-race-for-rp-facilitate-awaren/. Accessed .

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