Our Stories

Dawn’s Story

In 2006, when I was 24 years old, I was diagnosed with FSGS. I was a very active person and never felt sick. I felt run down at times, but nothing that concerned me.

One day I went in for a follow up appointment for bronchitis and mentioned edema in my legs.  The doctor ran labs and within four hours, she called and said I needed to do a 24-hour urine test.  After the results of that, I was sent to a nephrologist.

After my kidney biopsy in Feb 2007, I was diagnosed with primary FSGS.  I have gone through the steriod regiment. I started with 120mg of Prednisone every other day for six months. That didn’t work. Then, I tried Cyclosporine. I had very bad reactions to that and ended up losing 25 pounds. In April, 2010, they put me on Prograf, I again didn’t respond and was very sick for six months. I am currently maintaining my disease with my normal medications. They want to try Cellcept next.

I also have low B12 and Vitamin D levels. I was recently diagnosed with severe anemia.  They do not know why in a two-month span I became severely anemic. I am still trying to bring my levels up. They are not having luck with iron supplement. I hope they figure it out soon so I can become as active as I was.

Any helpful information or advice would be greatly appreciated. You can reach me at NephSpace. My username is dawn32482.

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