Background/Purpose: Becoming a mother was the most pivotal moment of my life. From early on, I instilled the importance of a physical, healthy lifestyle for my two boys. I encouraged adventure and exploration with biking, walking and swimming in our picturesque Canadian backdrop.

In 2011, I started to experience painful swelling of the cartilaginous portions of my ears – which was so intense, I could not function. I was treated consistently and unsuccessfully with antibiotics. I was weak, tired, and in a constant state of cloudiness – I could no longer keep up with my children. As time moved forward, the episodes increased in intensity and frequency, and I started experiencing debilitating joint pain. Everyday was a struggle.

After finally being referred to a rheumatologist in 2015,  I was diagnosed with the rare and sometimes fatal disease Relapsing Polychondritis (RP). Although relieved to finally have an answer, I was distraught with the lack of resources and information available for RP.

Intervention:

The complexities of RP require a multidisciplinary team. Although treatment was started swiftly, the doctors I met with admittedly knew little of the disease. I decided to do whatever I could to educate myself about the illness. In late 2015, I reached out to the Relapsing Polychondritis Foundation and became the first international advocate for the U.S based group – eventually meeting a fellow patient in person at the 2016 LA autoimmune walk.

After this inspiring encounter, I decided to expand my international mission of awareness for RP. In 2017, I spearheaded the creation of the Canadian Society for Relapsing Polychondritis (CSRP) and successfully established the first Canadian RP non-profit organization focused on awareness, education, and patient support.

Maintenance:

As Chair of the CSRP, I lead in the organization of annual awareness campaigns in Canada. Our inaugural event featured medical professionals speaking about the illness to a crowd of 100, which was only a dream a few years previous. Each subsequent CSRP event has seen an increase in attendees – promoting awareness and encouraging patient wellness while focusing on what those with RP CAN do.

I proudly represent the CSRP in partnerships with the RP Foundation and Race for RP, attending the past three American College of Rheumatology (ACR) conferences alongside these organizations. I have had the honor of meeting experts in the field of rheumatology and the privilege of attending the 2019 RP investigators meeting – an international collaboration of professionals and advocates interested in the advancement of research for RP.

Quality of Life:

RP will forever be synonymous with who I am. Although I am plagued with the effects of the disease everyday, I am grateful for my ability to increase awareness.

Supporting those who feel like I did 5 years ago when I was first diagnosed has been the most rewarding aspect for me living with a rare autoimmune disease. I have solace in knowing that that my efforts, and the efforts of our international team, are helping others with RP.

Although it is difficult to be exactly who I was before RP, I am now instilling the power of knowledge and advocacy in my children. Teaching them that when life throws you obstacles, it is important to face them head on as there is strength in knowledge.

Allegonda Imeson and the Canadian Society for Relapsing Polychondritis (CSRP).

Allegonda Imeson and her family.

The Canadian Society for Relapsing Polychondritis (CSRP) logo.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/coping-through-advocacy-my-story-living-with-relapsing-polychondritis/