Pediatric FSGS Patient Stories

If I were to find a theme woven into the story of my 11-year-old daughter, it would be "the presence of God." Acacia's story always has been, and continues to be, filled with sacred presence [...]

When the bloodwork came back from her 4four-year-­old check-­up, our pediatrician discovered that Alyssa had high cholesterol. In response, we immediately changed her to a vegetarian...

It was my first semester of freshmen year at college, fall 2015. I was away from all of my family and friends. One day, I noticed my feet and ankles were extremely swollen to the point where...

I've been through a lot since I was a baby. I've come a long way with this disease, and yet I'm STILL fighting. I never got to have a normal childhood due to being in hospitals all the time...

At the age of two, my daughter Brenda was a happy, chubby, bubbly toddler. She was the light of our lives and nothing could bring her down. One day I got a call from the daycare center saying [...]

In August, Charlie woke up with extremely puffy eyes. We thought it was an allergic reaction, and she had a five year check-up that day so we waited until her doctor's appointment to get it...

My name is Dylan and I am five years old. In January, I started getting tired lots and my face was swollen. My local doctor thought it was allergies or sinus problems. My mummy didn't agree, and...

It can happen to any child. Gina is an 18-year-old girl who loves Tumblr, drawing and anime, and was in color guard all four years of high school. She was first diagnosed with FSGS when she was [...]

Jared is a twin and lives with his three brothers, mother and father. He is very strong and determined. He likes playing video games and playing sports. He goes to school, plays for his high [...]

Kara was around two and a half years old when she was diagnosed with Nephrotic Syndrome. At first we were told she had Minimal Change Disease and would hopefully outgrow it, but soon a kidney [...]

Kennedy has always been an active child and one would never know that there is anything wrong with her. At the age of 2, we started to potty train Kennedy and she kept having UTIs — she would [...]

My name is Lauren and I am nine years old. I was diagnosed in May 2018 with FSGS. The doctors thought it was allergies, but they found protein in my urine, and from there they diagnosed...

When I was born, I had a lot of stomach pains. One day when I was three, it got so severe I went right to the hospital. There I was diagnosed with FSGS and started to take many medications. I [...]

In the spring of 2015, my mom started to notice that I seemed to be a little puffy but didn't think much of it. When summer came, I started waking up with my eyes a little puffy. Over the next [...]

Marley was diagnosed right before her third birthday — she barely made it out of the hospital for her party — and it was a very scary time. She had retained fluid throughout her entire body [...]

At age two, my perfect princess was attending daycare and we noticed her swelling up, so I took her to the ER and we got the news that she had Nephrotic Syndrome; we were then admitted to the...

I was 17 years old when I was diagnosed with Nephrotic Syndrome. It was first seen because my eyes were swollen. We went to an eye hospital. After a few days we noticed swelling in my legs, and [...]

Teagan was diagnosed with Nephrotic Syndrome after fighting a virus in early 2014 — she had puffy eyelids at the end of a day in preschool at the age of 3. She was deemed steroid resistant [...]