Our Stories

Jamie’s Story 

Growing up I was a very physically active person, and have always taken care of my body. I played soccer from the time I was four years old and continued with sports through high school and college. 

Having been so active and health conscience, I was initially shocked when I was diagnosed with FSGS in August of 2009 at the age of 26. 

It all started in the beginning of 2005 when I started feeling much more tired than usual. I went to my doctor and was treated for mild anemia. He put me on iron pills for three months with no follow up needed. For the next four years I always felt like something was off, but could not pinpoint what that feeling was.

In May of 2009, I took a turn for the worse. I gradually started to lose weight (already being on the thin side), and was feeling extreme fatigue. I went back to the same doctor, had some more blood work done, and he continued to treat me for anemia. My doctor had crossed out the abnormal levels and wrote "OK" by them. He also ignored the amount of protein I was spilling which was about 1 gram per day. He mentioned that I was young so not to worry. Unfamiliar with the abnormal readings, I looked up the abnormalities online and realized that those results had to do with my kidney function. 

I then took the initiative and made an appointment with a nephrologist. With a quick glance, he knew that something was wrong. From there, an endless amount of tests began. After three long months of constant blood work, a kidney ultrasound and a kidney biopsy, I was diagnosed with Secondary FSGS, meaning that something else has caused my kidneys to fail. To make it worse, my nephrologist reviewed my blood results as far back as I was able to provide, and he determined that I had FSGS for at least five years. 

Every test that could possibly be taken to determine what caused my kidneys to fail turned up negative.  Had I been diagnosed five years earlier, the extent of the damage to my kidneys would not be as bad. I was told by my nephrologist that if this disease was caught in the early stages, things might have been different. It was very upsetting for me to hear that due to the advancement of this disease, my kidneys will eventually fail and I will need dialysis or a transplant to live.   

When I was first diagnosed, I felt massive amounts of anger towards my primary care physician, as well self hatred towards myself, thinking I did something to deserve this. I do not fall under any of the categories that put a person at risk for kidney disease. 

It was hard for me to come around and accept that this was my reality. It took a while for me to reach the stage of acceptance, but once I was to that point I had been feeling better. Unfortunately, feeling good was not long lasting. In the summer of 2010 I had started dealing with sudden stomach problems. Every time I ate I felt sick and was not eating en