Our Stories

Heather's Story 

I was diagnosed with FSGS in 1994 when I was 19. For me, it has been a slow-moving disease, but I’m sad to say it has finally caught up with me.

My kidney function is now at just 23 percent. I am preparing for dialysis and hope I can stay at this number for awhile. I am on a low potassium, low phosphorus diet, which is alright. However, I am a big fruit and veggie eater so I have had to "adjust." I will do everything I can to try to keep myself healthy!

As this disease is catching up with me, it’s been pretty hard. I have an 11-year-old son and the best husband a girl could ask for. I need to stay healthy to live a long life with those two. I also have such a supportive extended family. I am truly blessed. I am also blessed to have many people tell me they will get tested to see if they are a match.

I am trying the best I can to stay positive. I can't sit around and mope.  Staying busy and keeping a smile is good medicine.

I live in Michigan and would love to get in touch with others around my age who are going through the same thing. 

I pray for a cure someday! I am just happy there are options for people with FSGS.

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