Patient Stories

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Will’s Story

In 2008 at the age of 25, Will Wellman had just graduated from graduate school when he began experiencing a variety of symptoms such as fatigue, stomach pains, and weight gain. After a few days of continued symptoms, he decided to visit a primary care doctor. The doctor ran a few tests and determined that kidney issues were causing the symptoms. A week later a kidney biopsy revealed that Will had the kidney disease Minimal Change Disease. He was immediately put on steroids to combat the disease. Unfortunately, the disease showed no positive response to the steroids and Will was put on a variety of immunosuppressants and then chemotherapy. Will’s body did not respond to either of these treatments and so he visited Boston to consult with specialists. A second biopsy was performed in Boston, and it was determined that the Minimal Change Disease had morphed into FSGS (Focal segmental glomerulosclerosis).

FSGS is an idiopathic disease with no current cure that affects 5,400 people yearly. Over 19,000 people are currently living with End Stage Renal Disease (ESRD) due to FSGS. The disease attacks the glomeruli, tiny filters in the kidney, scarring them permanently and, ultimately, leading to ESRD. Eighteen months after his original diagnosis, Will’s kidneys failed and he was put on dialysis at the age of 26; a treatment requiring multiple hours on a machine three times a week. Nine months later his mother donated one of her kidneys for a transplant. Although the transplant was successful, the disease relapsed (an occurrence in 50% of FSGS transplant patients) and permanently damaged half of the transplanted kidney within three weeks. Will had to be placed back on dialysis and will remain on it indefinitely until a cure for FSGS is found.

 

Nick’s Story

My story begins during spring break in my junior year of high school. Heading out to the beach my family noticed swelling in my legs and feet. By the end of the week with increased swelling and fatigue, I was diagnosed with Minimal Change Disease that causes Nephrotic Syndrome. Treatment began immediately with a high dose of Prednisone gradually decreasing over months. Since then I have relapsed three times. A kidney biopsy was performed which confirmed MCD and still a NS patient.

I am now a sophomore at Valencia College majoring in Music Education with plans to transfer to UCF my junior year. The diagnosis has definitely been a life changer, but not a life definer. With support from family and church, I continue to live life with hope that in the future there will be much needed improved treatments and a cure. Continued support of the NephCure Foundation and fundraisers like the 2014 Tampa Pig Jig are so important in finding a cure and a cause for NS and FSGS!

 

Deanna’s Story

I was pregnant with my only child at 27 yo. My husband and I were ecstatic. At my second prenatal appointment, the OBGYN stated the protein levels were high in my urine and referred me to a nephrologist. Initial, noninvasive testing could not determine a cause for the higher protein, so my nephrologist and OBGYN monitored me closely throughout pregnancy and recommended a kidney biopsy after my son was born. In May 2011, I was diagnosed with FSGS. This was all very new to me as a very healthy, new mom, and I had numerous questions. I found support and information through Nephcure and addressed my health issues head on.

I am happy to say that the medication has worked at keeping my illness controlled. I consider myself very lucky that my OBGYN caught the high protein levels and sent me to the nephrologist early. It is because of this that I can live a moderately normal lifestyle three years later. Finding a cure for FSGS and MCD is important because the maintenance drugs cause many side effects and do not work long term for most patients. With funding and research efforts, a cure can be found. My son is counting on it.