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Focal Segmental Glomerulosclerosis (FSGS)

Lauren H.

Children

Hi, my name is Lauren Hicks, In May 2018 my entire life changed. Receiving the diagnosis, you feel lost unfortunately, it doesn’t come with a handbook an you’re left to figure out how to now live with a disease without a cure. It was Easter in 2018, and I was 9 years old while other kids my age were hunting for Easter eggs. I was looking for the nearest hospital.

Everyone thought it was allergies, and that I would get over it soon, But, here I am 6 years later, and that headache still hurts like the day it started. I was admitted and treated in the hospital. I was given ibuprofen, the one thing a kidney patient cannot have. It was not until my pediatrician did a random urine test on me. Well, that random urine test was the best thing and worst thing to ever happen to me. We were able to find out I have a lot of protein in my urine, and I was diagnosed with nephrotic syndrome. This was hard to understand at nine years old, when all I wanted to do was play volleyball.

I have been in remission since 2020. I can play volleyball. My wish is that we can all be cured of this disease that not only takes over your kidneys but your mind, body, and the way you think.

I was placed in and out of the hospital until they did a biopsy. I found out I have FSGS also, known as Focal segmental glomerulosclerosis. After the biopsy, I was sent home under special request saying that I needed to stay in bed and rest 2 weeks tops.

Nephrotic syndrome is not well known, so understanding all this new information at once can lead someone into depression. And that is exactly what happened to 9-year-old me. But, as time went on, I fell into a cycle eat, sleep take meds repeat. It used to be eat, sleep and volleyball repeat but, after a while on steroids not only was I not able to play the sport I loved but, I no longer liked the way I looked and how I felt due to the affects of steroids. I have been in remission since 2020. I can play volleyball. My wish is that we can all be cured of this disease that not only takes over your kidneys but your mind, body, and the way you think. I hope that everyone with kidney disease one night can go to bed disease-free.

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Related Resources

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

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