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.
