Patient Voice spoke with Ruchi Ambike about her search to find community after being diagnosed with a rare disease.
“I had just started my master’s program in 2001 when a routine physical led me to be diagnosed with IgA nephropathy, a rare auto-immune disease of the kidneys. Honestly, I didn’t really worry about it at first. I didn’t know enough to be worried. I was put on a blood pressure medication, but I didn’t feel sick. I felt young and healthy and perfectly fine. It wasn’t until I got pregnant years later that I realized how serious this condition could be.
Over the course of two pregnancies, my kidney function rapidly started to decline. I progressed from stage one to stage three disease, and suddenly there was a lot more talk about treatment and outcomes and eventual transplant. It hit me then that I didn’t know anyone else with this condition. I had two young children and I didn’t know what my future looked like.”
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