Our Stories

Jessica’s Story

I was diagnosed in 2011 with FSGS at the age of 31. I had been noticing swelling in my legs and feet along with severe muscle cramps for several months, but never thought anything of it until the week before Thanksgiving when I was unable to get my sneakers on because I was so swollen. I made an appointment with my doctor and they sent me to the hospital to see if I had blood clots, which I did not.

The doctor’s office kept telling me that all I had was a urinary tract infection, but I was concerned that there was more than that going on. I went to another doctor the next week for a second opinion. After a urinalysis, he told me that I was spilling nearly 6 grams of protein in my urine -- and apparently that was a lot of protein. I was in to see a Nephrologist within a week.

The next week I had a kidney biopsy (New Years Eve, of all times!), which was followed by two weeks of waiting for the test results to come back from the Cleveland Clinic.  The diagnosis was FSGS. Since then I have started a round of 60 mg of Prednisone per day to see if that works and if not we will move on to the Cyclosporine.

It's scary to have this disease and know what can happen in the future but I have chosen to take the path of positive thinking. The Prednisone will work and I will be able to nip this thing. It helps to have such an awesome and supportive family and I think that is the most important part.

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