Our Stories

Levi's Story

Very suddenly and with little to no warning, I began to have a considerable amount of edema collecting in my knees and feet while standing at Christmas eve mass in 1997. When I woke up that Christmas morning, it was worse and I spent most of the next year in and out of the hospital, going through too many tests and treatments to list.

When the results of the biopsies came back the diagnosis was FSGS and the disease had progressed so rapidly over that year that every treatment option available failed to slow the diseases progression at all.

A year after my diagnosis I had come to the end of treatment options available and was faced with starting dialysis for the foreseeable future. That was 14 years ago. I missed half of my freshman and half of my sophomore year but finished high school on dialysis.

In my sophomore year at Penn State I underwent a cadaveric transplant from a six-month old. The FSGS recurred right away and I was back on dialysis within a month or so. I finished college and underwent another transplant after graduation in 2007, this one a living related transplant from my mom. The disease again came back right away. The doctors had a few new experimental treatment options, none of which slowed the disease.

I am now back on dialysis and have spent the years since trying to find the right balance of dialysis and work. The hardest part is finding a decent career that can work around a three-day-a-week dialysis schedule.

At this point, I'm working part time and living at home with my parents, waiting to one day hear about a breakthrough in the treatment of FSGS.

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