Looking for money for research and a cure

[okarol]

Looking for money for research and a cure

By Ernest Hooper, Metro Columnist
In Print: Tuesday, December 1, 2009

Clearwater's David Warner made it through the challenge. So far.

Tampa's Will Wellman wants to follow in his footsteps, even though doctors offer no guarantees.

But both wish they didn't have to walk down the path of nephrotic syndrome. And they both hope the community walks for them and others in the NephCure Walk on Dec. 12 at Clearwater's Sand Key Park.

Nephrotic syndrome? I hadn't heard of the degenerative kidney disease or focal segmental glomerulosclerosis (FSGS), another debilitating kidney ailment.

Yet doctors annually diagnose 8,400 people with the diseases, including former Miami Heat center Alonzo Mourning. Sadly, that number is on the rise. Researchers don't have a cure. Doctors don't know the cause.

Wellman, however, knows all about the symptoms. After graduating from the University of Kentucky in June 2008 with a master's in forestry, he aimed to go to Kenya where he planned to work for a Christian conservation group.

All that changed when he began to have severe stomach pain while on a boating outing with friends. He weighed himself and discovered he had gained 18 pounds.

Doctors initially diagnosed him with a less serious kidney ailment, minimal change disease. They treated him but the symptoms persisted.

Wellman, 25, found himself dealing with 30-50 pounds of water weight in his system. That left him largely confined to the bed because the water caused his feet and legs to swell when he stood.

The trip to Kenya remains on hold. So are most of the outdoor activities that led Wellman to forestry.

"I'm just rolling with the punches," said Wellman, who also deals with a loss of energy. "I can either be mad about it or deal with it."

Only after he visited specialists at Boston's Brigham and Women's Hospital did doctors change the diagnosis to FSGS. They stabilized him by changing his medicine, but eventually he will need a transplant.

Warner, 22, knows all about what a transplant will bring. He was 14 when All Children's Hospital doctors delivered the news he had FSGS. Amazingly, he maintained a high school baseball, golf and bowling career despite having to endure peritoneal dialysis.

Rays coach Don Zimmer learned about his courage, and Warner eventually got to throw a first pitch: an 84 mph strike over the heart of the plate.

In 2007, Warner finally received a new kidney. Although there is a 50 percent chance of the disease reoccurring, Warner beams hope and longs to help others.

He has spoken to more than 20 other patients about dialysis, transplants and nephrotic syndrome and wants a career that would allow him to counsel patients. Wellman readily admits that Warner's story is an affirming positive in his everyday struggles.

Warner's parents, David Sr. and Darla, eagerly work to promote the walk because they have a sense of gratitude and a desire to funnel money into research for the cause and a cure. Wellman's mother, Joyce Fisk, also has stepped up for the NephCure Walk.

If raising awareness simply involves strolling along the beach on what hopefully will be a sun-splashed day, I don't think these families are asking for too much from the community.

Log onto nephcure.org or call toll-free 1-866-637-4287.

That's all I'm saying.

http://www.tampabay.com/news/humaninterest/looking-for-money-for-research-and-a-cure/1055473