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Abstract Number: PP10

How Advocating for My Autoimmune Disease Led Me to Desire to Pursue a Career in Rheumatology

Brooklyn Johnson1 and Kathleen Collins2, 1Memphis, TN, 2LeBonheur Children's Hospital, Memphis, TN

Meeting: ACR Convergence 2022

Keywords: dermatomyositis, Systemic lupus erythematosus (SLE)

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Session Information

Date: Saturday, November 12, 2022

Title: Patient Perspectives Poster

Session Type: Poster Session A

Session Time: 1:00PM-3:00PM

Background/Purpose: The summer before my senior year, I developed a faint rash on my face and my arms. At a dermatology appointment, I pointed this out to the PA, and she thought it may be DLE, so she took a skin biopsy. When I got my stitches out the following week, I was extremely tired, my rash had spread, and I was struggling to walk long distances. She called a rheumatologist, and I was able to get an appointment the next day.

Several days later I went to the emergency room and after many long hours, I was admitted with suspected SLE. I became very weak and struggled with walking, raising my arms, and even talking. I was officially diagnosed with SLE and JDM. Within a few days, I began to feel a lot better and was discharged home, only to be readmitted a week later for right-sided weakness. I received an IVIG infusion which helped me feel a lot stronger, but I still would have lots of work to do in outpatient therapy when I was discharged.

Intervention: When I was first diagnosed, I really enjoyed reading articles about my illnesses. While I was in the hospital, my rheumatologist gave me Myositis and You, a book about JDM. I finished this 400+ page book before I was even discharged and was very interested in learning more about JDM and other related conditions. A few months later, my rheumatologist invited me to attend ACR’s Advocates for Arthritis, and I really enjoyed the opportunity to advocate for myself and so many others with rheumatic diseases.

Maintenance: Being a college student with a chronic illness is hard. I sometimes struggle in my classes due to fatigue, brain fog, and just feeling unwell. However, I am part of several disability advocacy and support groups on campus, and I appreciate the friendships I’ve made with people with other autoimmune conditions similar to mine and being able to reach out to anyone with questions about navigating college with a chronic condition. I enjoy advocacy events both on and off-campus. I have continued to attend Advocates for Arthritis and look forward to continuing in future years. This past year, I have enjoyed getting to work with the ACR for media advocacy as well.

Quality of Life: I am now a junior in college on a pre-med track with a major in Health Equity. I enjoy this major because I get to see the societal and environmental determinants of health. I believe my sociology, urban studies, and policy classes, in addition to my experience as a patient and patient advocate, will prepare me to be an empathetic and understanding physician.


Disclosures: B. Johnson, None; K. Collins, None.

To cite this abstract in AMA style:

Johnson B, Collins K. How Advocating for My Autoimmune Disease Led Me to Desire to Pursue a Career in Rheumatology [abstract]. Arthritis Rheumatol. 2022; 74 (suppl 9). https://acrabstracts.org/abstract/how-advocating-for-my-autoimmune-disease-led-me-to-desire-to-pursue-a-career-in-rheumatology/. Accessed .
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All abstracts accepted to ACR Convergence are under media embargo once the ACR has notified presenters of their abstract’s acceptance. They may be presented at other meetings or published as manuscripts after this time but should not be discussed in non-scholarly venues or outlets. The following embargo policies are strictly enforced by the ACR.

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