Kidney on a Mission: Silly Costume Draws Attention to Serious Disease

Oct. 7, 2010— -- It takes a little bit of silliness for Bill Brazell to draw attention to a very serious disease that's affected him and several generations of his family.

"Every year, I go to a couple of walks dressed as a kidney," said Brazell.

Brazell, 42, dons his Kenny the Kidney costume, complete with Styrofoam cysts, to raise awareness about polycystic kidney disease, or PKD, a genetic disorder that causes cysts to form on the kidneys, leading the kidneys to become enlarged and eventually causing kidney failure leading to dialysis or transplantation.

"It's the most common inherited disorder in the world after the BRCA genes for breast cancer," said Dr. Theodore Steinman, professor of medicine at Harvard Medical School. "It's the most common single-gene defect in the world, and affects about 600,000 Americans and 12.5 million people worldwide," he added.

Despite the fact that it's so common and so insidious, Brazell says it's an under-recognized disease, which is why he steps out as his kidney alter-ego.

"I've been at events and met kids who don't even know what a kidney is," said Brazell.

But he knows all about the kidneys and how PKD can affect them.

His father and uncle both had PKD, and they passed it on to five of their combined six children.

"I was diagnosed in my freshman year of college, but I didn't do anything about it for a long time," said Brazell. "My dad told me not to think about it until I got older."

But when Brazell was 35, his cousin, who also had PKD, died after having an aneurysm. He was also 35.

"I didn't want to die this young," Brazell said, and he started to take action by raising money and awareness. He also now serves on the Board of Trustees of the PKD Foundation.

Awareness Vital to Saving Money and Lives

"PKD is more common than sickle cell anemia, Down syndrome, muscular dystrophy, Huntington's disease, hemophilia and cystic fibrosis combined, yet all these diseases are more well-known," said Brazell.

By drawing attention to the disease, Brazell hopes to get more money for research from donors and from Congress.