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Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Allie C.

Adults

I was diagnosed at five years old. I used to wake up with very puffy eyes, and my parents thought it was just allergies until we went to the doctor. They discovered I was spilling protein in my urine and referred me to a nephrologist. A kidney biopsy later confirmed that I had FSGS. 

I’ve been so inspired by the nurses and doctors throughout my journey, and I’m even considering becoming a nurse one day. 

I spent a lot of time in the hospital as a kid receiving steroids, so I often felt different from the other kids. Eventually, I went into remission and stayed in remission through parts of elementary school, middle school, and high school. I relapsed again in 2017. I was treated with steroids in the hospital and received a round of Rituxan. I became septic and extremely sick, but I eventually went into remission again. 

I relapsed again in 2023 and had to start dialysis in May 2025. I received a kidney transplant on June 10. My little sister donated her kidney. I’m currently in recovery and feel incredibly blessed to have the support of my friends and family. 

I’m excited to return to work and maybe even apply to a school because I never went to college. I’ve been so inspired by the nurses and doctors throughout my journey, and I’m even considering becoming a nurse one day. 

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Related Resources

News

NephCure Celebrates FSGS Awareness Day on June 9th, 2026 

Nephcure Site Image

Informational Documents

Sparsentan (FILSPARI) for FSGS: FAQs

Video

Update on FDA Decision About Sparsentan for FSGS | NephCure Town Hall

News

Finding Strength, One Brick at a Time: Amanda Skeens’ Transplant Journey

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