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 he traveled to Boston to consult with specialists. They performed a second biopsy in Boston and 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. More than 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 began dialysis at the age of 26; a treatment which requires many hours on a machine three times a week. Nine months later, his mother donated one of her kidneys for a transplant. Although the operation 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 was placed back on dialysis and will remain on the treatment indefinitely until a cure doctors discover a cure for FSGS.

 

Nick’s Story

Nick's battle with FSGS began during spring break of his junior year in high school. While heading out to the beach, his family noticed swelling in his legs and feet. By the end of the week, his swelling and fatigue had increased and doctors diagnosed him with Minimal Change Disease (MCD), which causes Nephrotic Syndrome (NS). Nick immediately began treatment, including a high dose of Prednisone, gradually decreasing over the months. Nick relapsed three times and had a kidney biopsy performed, confirming MCD and that he was still an NS patient.

Nick continues to live his life with the kidney disease, but has said that "the diagnosis has been a life changer, but not a life definer." With support from both family and church, he continues to live his life with the hope that there will be the needed improved in both treatments and, ultimately, a cure. Continued support of the NephCure Foundation and fundraisers like the Tampa Pig Jig are critical in finding a cure and a cause for NS and FSGS!

Deanna’s Story

While pregnant with her child, Deanna visited her OBGYN for her second prenatal appointment. Her doctor informed her that her protein levels were high and referred her to a nephrologist. Initial, noninvasive testing could not determine a cause for the higher protein, so the nephrologist and OBGYN monitored her closely throughout pregnancy and recommended a kidney biopsy after her son was born. In May 2011, doctors diagnosed Deanna with FSGS. A new mom, she naturally had numerous questions and found support and information through NephCure. The organization helped her address her health issues head-on.

Medication has helped keep Deanna's illness controlled, and she considers herself fortunate for the early detection by her OBGYN. With help from her nephrologist, she has been able to live a moderately normal lifestyle years later. Even with the help of medications, Deanna believes that finding a cure for FSGS and MCD is essential because maintenance drugs cause side effects and do not work long term for most patients. Both Deanna and her family live in the hope that with funding and research efforts, a cure can be found.