U of M researchers find possible cure for rare skin disease

2:40 PM, Sep 12, 2011   |    comments
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MINNEAPOLIS -- Researchers at the University of Minnesota are making great strides in the treatment of a rare skin disease that is usually fatal.

These days, Kyle Hicks takes no human touch for granted, even when it's the touch of his doctor checking his lungs with a stethoscope.

Kyle suffers from a rare skin disease. It's called epidermolysis bullosa - or EB - and it prevents skin from staying attached to the body.

Kyle's skin blisters with the slightest touch and falls off, causing excruciating pain. He's one of about a thousand people worldwide with the most severe form of EB.

"Its painful all the time. 24-7," says Kyle.

The disease has affected his skin, and his growth. Kyle is a 20-year-old college student, but looks and sounds like a boy.

Most people with EB die from infection as children or from skin cancer as adults. Kyle and his family believed he would suffer the same fate. The disease was incurable.

But then Kyle, who's from Kansas, read about revolutionary EB research here in Minnesota - a discovery that bone marrow stem cells could help keep skin in place.

Kyle reached out to Dr. John Wagner at the U of M Amplatz Children's Hospital.

"It's the very collagen - think of it as the glue that keeps the outer layer of your skin attached to your body. When that's missing it takes very little to shear it off and what we're doing is we're trying to recreate that glue," says Dr. Wagner.

Last spring, Kyle and mother travelled to the Twin Cities for the bone marrow transplant they hoped could cure him. Weeks later, doctors say the bone marrow stem cells are actually creating new collagen and possibly new skin.

And while it's too early to know what will happen to Kyle long term, he's already enjoying so many things we often take for granted, like the feel of the sun or the air on his skin.

He's had to spend his entire life in bandages. Today, for the first time ever, Kyle is proud to show us his new skin. He is able to expose patches of skin without fear and looks forward to unwrapping the bandages even more in the future.

"It's very exciting. Every day it's something to look forward to," says Kyle.

Researchers are looking into whether the bone marrow stem cells could be used for other patients, like burn victims. Kyle is the oldest person to receive this treatment for EB.

(Copyright 2011 by KARE. All Rights Reserved.)

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