Background/Purpose: Naomi was diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of 18, after enduring 3 years of misdiagnoses. Similarly, Natasha received a diagnosis of the same condition at the age of 13. Despite their distinct timelines, they lived with the challenges of chronic autoimmune disease. To seek support, they sought out communities where they could connect with others who shared similar lived experiences. However, this proved difficult at times, prompting them to take the initiative in creating their own inclusive and supportive spaces.

Intervention: Recognizing a gap in the chronic illness community, Natasha decided to create an online platform for youth with rheumatic diseases. “I wanted to make sure other young people would never have to feel alone and go through the experience I had.” This led her to create Take a Pain Check (TAPC), a non-profit organization which supports, empowers, and provides an inclusive space where youth with rheumatic diseases feel understood. They run ambassador programs, chronic illness-related events, host podcasts, and monthly hangouts. TAPC has brought together a global network of healthcare professionals and patients to raise awareness and advocate for young people with invisible disabilities. To combine their passion for research and experiences with JIA, they joined the Choice Research Lab as patient partners. The lab focuses on patient engagement, valuing patient voices in research and shared decision-making. As patient partners, they represent young people’s perspectives within the healthcare system, from diagnosis in adolescence into adulthood, influencing knowledge translation. Naomi emphasized the value of her role in a TAPC podcast episode, “Being a patient partner enables me to use both my knowledge and experience as a researcher and respondent to participate in research promotion that values lived experience.”

Maintenance: Their commitment to raising awareness about arthritis has garnered recognition from the broadcaster Canadian Broadcasting Corporation (CBC) leading them to produce a documentary “If it weren’t for my friends, I wouldn’t have survived”. The documentary emphasizes the importance of self-advocacy, finding and building a community, patient engagement and the role of friendship during one’s diagnosis. Having a friend who has a similar condition can alleviate the burden of navigating it alone. This resource provides insight on obtaining support, advocating and raising awareness. Following the documentary, TAPC saw a 20% increase in followers.

Quality of Life: Arthritis is often wrongly perceived as a disease that only affects older individuals. They are determined to challenge this misconception and break down the associated stigma. Through their advocacy work, they aim to create positive change and increase awareness. They are committed to advocating for themselves and others in the chronic disease community. They hope to inspire others and expand inclusive advocacy measures in both research and social media. Their ultimate goal is to empower those affected by chronic conditions and to foster a more understanding and accepting society.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/putting-lived-experience-into-action-flipping-the-script-on-living-with-a-chronic-disease/