Session Type: Patient Perspectives
Session Time: 3:45PM-4:00PM
Background/Purpose: Trish Peters was diagnosed with JIA at 11. She has been on Methotrexate to lessen disease activity for her knees and hands. She does competitive swimming, running and rugby. It has taken her a long time to understand and accept that she is different from other people in how her body heals, but she has learned to appreciate it as a part of who she is. At 13, Natasha had inflamed fingers, wrists, ankles and feet in which an MRI showed extensive damage due to JIA. She started Prednisone and then switched to Methotrexate. However, six months in, there was no change to her swelling or pain. Natasha took Humira, then Actemra, then Tocilizumab, all of which failed to reduce her disease activity. Finally, ten corticosteroid injections in her joints and triple therapy – a combination of Methotrexate, Sulfasalazine and Plaquenil brought her blood and her inflammation under control. She believes that her healthy eating habits, her regular dance routine, and daily meditation along with the medications have provided her with a pain-free, happy and manageable lifestyle.
Intervention: Our friendship evolved in January 2020, when we both became leaders at Cassie and Friends. While organizing events for youth together we discussed our stories and realized that we shared similar experiences. We both had struggled to find support and talk to people our age about how we felt. We decided to create a platform to make sure that young patients who are initially diagnosed with any type of rheumatic disease do not go through the same rough journey we did. We co-founded and launched a podcast called Take a Pain Check (TAPC) in March of 2021. It is available on Spotify, YouTube, Apple podcast, and Anchor. Every week, TAPC features a new guest who shares their unique lived experience of rheumatic disease, offering listeners different perspectives to learn from.
Maintenance: TAPC has received amazing feedback from numerous guests – with and without arthritis as well as from hospitals and rheumatology clinics across Canada who have mentioned how youth need the support, moments of laughter, and fun related to their condition. Many guest speakers wished a platform like this existed when they were diagnosed as youth.
Quality of Life: TAPC is currently changing the lives of youth impacted with rheumatic diseases by modelling a wide variety of perspectives and experiences. This is especially important for youth who, like us, may feel too shy or lack the resources to advocate for themselves or meet others. Through TAPC, we have been able to spread the word about research being done. We want to ensure that people don’t have to search endlessly for support. We want to actually make a difference in the lives of young people and inspire them to make the best out of this disease.
To cite this abstract in AMA style:Peters T, Trehan N. “Our Arthritis May Be Chronic but We Are Definitely Iconic” – Two Teens Created a National Podcast for Youth with Rheumatic Diseases [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 9). https://acrabstracts.org/abstract/our-arthritis-may-be-chronic-but-we-are-definitely-iconic-two-teens-created-a-national-podcast-for-youth-with-rheumatic-diseases/. Accessed .
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/our-arthritis-may-be-chronic-but-we-are-definitely-iconic-two-teens-created-a-national-podcast-for-youth-with-rheumatic-diseases/