Tazewell boy with rare skin disease can't venture out in sun

Tazewell boy with rare skin disease can't venture out in sun

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Peyton Chadwell, 11, was just diagnosed with Xeroderma Pigmentosum or XP in June. Peyton Chadwell, 11, was just diagnosed with Xeroderma Pigmentosum or XP in June.
Peyton's mom, Tonya Chadwell, helps him put on the visor. Peyton's mom, Tonya Chadwell, helps him put on the visor.
He also wears under armor gloves. He also wears under armor gloves.

By ERICA ESTEP
6 News Anchor/Reporter

TAZEWELL (WATE) -- A Tazewell boy suffers from a rare skin disease. He can't be out in the sunlight.

The sun's UV rays are so damaging to his skin that if it wasn't protected, he would likely develop multiple skin cancers.

Peyton Chadwell, 11, was just diagnosed with Xeroderma Pigmentosum or XP in June. His life has changed forever and his condition is so rare that doctors from all over the country want to meet him.

On Friday, Peyton and his family were invited to a meeting of dermatologists from the East Tennessee region.

They wanted to talk with the Chadwell family and see Peyton up close so they can better diagnose the disease if they see it.

Peyton must wear a special suit that protects him from harmful UV rays. "I've got to wear a visor to keep the sun out and I've got to wear under armor gloves and I got this neck thing that goes behind my neck, my shirt and pants."

The protective clothing allows Peyton to continue playing sports.

He says the hardest part is that it gets hot inside the mask. People also stare and ask lots of questions. "I tell them that I have a rare skin disease and I've got to wear this because the sun gives me cancer."

The hardest part for Peyton's parents is knowing that in severe cases, the life expectancy is only about 20 years.

His mother, Tonya Chadwell, says the toughest thing is, "looking at him and thinking, how many more years or getting our first cancer."

Even bright lights can damage Peyton's skin. Each time he enters a room he must use a UV meter to be sure it's safe.

Morristown dermatologist Dr. Charles Fulk diagnosed Peyton's disease. "I've been in dermatology 31 years and I have never seen a case. I've seen them in books and things like that, but never in the flesh."

Dr. Fulk says Peyton's prognosis is good, though, because he has no signs so far of cancer. "He's got the best attitude I've ever seen. They've figured out a ways to work around this to have a life."

Peyton's mom wants to educate others while helping her son.

"Well there's no cure for this and I want to find people that will maybe do testing to see because there's nothing in this area. We are going to Utah then the National Institute of Health, but in this area there's nothing, no answers," she says. 

Peyton will go to Salt Lake City, Utah for a free retreat put on by the XP Family Support Group in February. The group people with XP.

 Next, he'll go to the National Institute of Health to be part of a research study. Those who have XP usually have very fair skin and blister easily.

Different textures on the skin and a burning or tingling sensation are also early signs.  

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