Our Stories

Angelina's Story

My journey began about 2004 when I was 24 and started to have random protein loss in my urine. It started in small amounts and then it would go away over night and it seemed to be for no reason.

My gynecologist was the first to find the protein loss and changes. So I decided to follow up with a urologist, but all they told me was that there was nothing wrong with me. My primary doctor wouldn't listen to me when I said that I was having these weird symptoms and changes in my health, like extreme fatigue. They just said it was stress and ignored the protein loss. It was my gynecologist that listened to me. She monitored me carefully for any changes over the next six years.

During one of my checkups she said that I had a high loss of over +4 protein and it wasn't going away. I followed up with another urologist and he sent me to a kidney specialist where we went through a year of slowly evaluating and eliminating one possible cause after another. He put me on blood pressure medication to prevent some of the protein loss and managed my cholesterol, which was high.

I finally had a kidney biopsy a year after I began treatment at 29 years old and was diagnosed with FSGS. I don't have any family history of this disease with the exception of a kidney stone or unrelated infection. I am one of the lucky ones that have found a diagnosis early, before my kidneys started to fully fail. At this point in treatment, I have full normal kidney function but they do have damage.

About six months ago I started having heart issues. I was passing out, my heart would race, I was light headed and had extremely bad fatigue. I was diagnosed with Mitral Valve Prolapse with moderate leakage. My doctors are watching me closely for any changes. The possibility of an underlying autoimmune disorder is possible, but I am staying optimistic.

I try to take care of myself and stay positive. I am doing so much better since my diagnosis. With medication, diet and life style changes I am able to slow down the progression of the disease. I know that there is no cure, but just the fact that now I know what is going on with my body, gives me an inner peace and understanding about my disease. With the support of my family and friends, I am able to face each day-one step at a time.

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