In her early 20s, Marimee (who goes by Toya) was diagnosed with lupus nephritis. This is a complication found in people with systemic lupus, in which lupus autoantibodies damage the kidneys, causing impaired function or even kidney failure. At first, Toya was horrified to discover she had this disease, being forced to confront potentialities like dialysis and a kidney transplant. However, after a tumultuous journey in which she learned much about advocating for herself, Toya is now in remission after trying a game-changing medication.
Systemic lupus is an autoimmune condition in which the immune system mistakenly attacks healthy tissue throughout the body. Toya was first diagnosed with this disease at just 15 years old, a revelation that completely disrupted her life. During her senior year of high school she started experiencing extreme joint pain while suddenly becoming allergic to almost everything. Her allergist was the first to suggest lupus as a diagnosis. The three month wait to see a rheumatologist was almost unbearable as she experienced constant fevers. Once her lupus diagnosis was confirmed she was determined not to let this disease slow her down, but soon after starting college she recognized the need to put school on pause and rest.
Unfortunately, resting did not provide any health benefit. She continued to decline and ended up in the hospital for 10 days, where she learned that she had lupus nephritis and her kidneys were failing. This ended up being a turning point for Toya, as this traumatic revelation helped push her to advocate for herself more vigorously. She did some research and discovered positive outcomes for lupus patients taking the drug benlysta. After pushing her doctor for a prescription, Toya now finds herself in remission with dramatically improved kidney function.
In this episode of the Major Pain podcast, Toya discusses how this traumatic medical journey has inspired her to create the Village Tree Health Support Network, a startup nonprofit designed to be a hub for patient care access and case management. She describes this endeavor as “something that I was meant to do. I’m able to turn my pain into purpose.” She now recognizes the importance of advocating on behalf of the chronic illness community, discovering a passion and direction she never would have considered without her diagnosis.
Connect with Toya on Instagram @toyajules_
Check out Jesse’s appearance on the Seizure Salad podcast: https://seizuresalad.podbean.com/e/misdiagnosis-rollercoaster-w-jesse-mercury-of-the-major-pain-podcast/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/
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