Adult FSGS Patient Stories

January 14, 2016. I will never forget that day. The day the doctor called me to reveal the result of my kidney biopsy, the day I was diagnosed with FSGS. The symptoms started two months earlier [...]

I found out that I had kidney disease when I was pregnant with my daughter. I was officially diagnosed with FSGS through biopsy after she was born. I'm stage one, which is a blessing [...]

My daughter was about nine months old when I got sick. I still had the frazzled new mom thing going on, and it took me two days to realize I had swelled up to the point no clothes fit me [...]

I'm a 23-year-old male college student whose life has been turned around from kidney failure. I have a needle phobia, and having dialysis three times a week freaks me out every time. But I do it [...]

I was training to climb Mt. Ranier. I completed a 14 mile hike on Sunday with a full pack, and was in the ER the following week. I had biopsies and was diagnosed with Minimal Change Disease, and [...]

My name is Briana and I’m 39 years old. I was diagnosed with FSGS in 2003, but I started showing signs of the disease during my first pregnancy in 2000. During that time I was young, and [...]

I went in for a physical for summer camp when I was 11, and my protein levels came back high. That was the beginning of my battle with kidney disease. For the next several years, my mom dragged [...]

I am 54 years old and have recently been placed on the transplant list. My current GFR is 17, and I have secondary FSGS as a result of only having one kidney (congenital absence). I first [...]

My protein was high with my first pregnancy at age 27. After my son was born when I was 28, I was diagnosed with FSGS via biopsy. The years since have included some interesting treatments and [...]

I was away on a girls' weekend when my ankles swelled and I noticed my clothes were tight. I called my doctor right away when I got home and found myself sitting in a nephrologist's office four [...]

I am a 66-year-old white male with no history of kidney disease. I started having swelling in my legs and feet in November 2015. My doctor changed my BP mess, trying to relieve swelling. That [...]

I was diagnosed at 25 years old via biopsy. It confirmed FSGS. I had a 4-year-old at that time. I have an 11- and 4-year-old now. The first symptoms were swelling of my hands, feet, and eyes [...]

After a slow progression of FSGS the last 20 years, my kidneys were finally giving up. After many tests, I was put on the transplant list a year and four months ago, but I didn’t have to wait [...]

My brother gave me one of his kidneys almost 31 years ago. We have both done very well. I have spent a lifetime taking care of myself, and in turn have been able to keep my kidney without [...]

I have been on a difficult journey for over three years now, but I am a fighter and a survivor. I have had many bad days, and when I think I have hit my lowest of lows, another obstacle is put [...]

I believe that if it wasn't for my husband Scott, I wouldn't be here today. When I was sick and misdiagnosed for several months, he was my warrior. He kept pushing and fighting for a doctor to [...]

My name is Leah and I’m 31 years old. I started having foamy urine (apparently this was because I had proteinuria) in November 2013. I did not think much of it at first; however, I figured [...]

At age 14, Louis had just moved to the United States from the island of Mauritius when he was diagnosed with idiopathic FSGS. “I remember my feet being so swollen that I could not fit into my [...]

One fateful day, I fell ill and wasn’t seeming to get any better. My fever was stubbornly high and nausea/vomiting prevented me from eating anything. I remember my mother and I waiting at this [...]

In spring 2012, during my senior baseball season at Plymouth State University, I was diagnosed with FSGS. This disease abruptly cut my baseball career short, never to see the field again. I went [...]

It was May of 2014 when I first knew something was wrong. I was 23, and I was working as an assistant at a busy salon. I drove a really nice car, had lots of friends, and the hardest decision I [...]

In 1996, after my first child, I was really tired, couldn't hold anything down, and was running a fever. I thought I had the flu, but after a month of not feeling any better I went to the [...]

Doctors discovered I had a kidney problem when I was pregnant with my son at the age of 18. It was a rough pregnancy, and the final diagnosis came with a biopsy six months after I gave birth to [...]

I was diagnosed with FSGS after giving birth to my second child. My doctors told me that my GFR was at 45% and that there was no cure. I remember feeling like my life was over. At that point, I [...]