Man with rare disease takes extra precautions in heat


MISSOULA, Mont. - With hot weather comes a challenging season for one Missoula man. Joseph Fillerup has a rare skin disease called Epidermolysis Bullosa, or EB.

EB affects one child out of every 20,000. About 200 children are born with it each year.

In the mildest stage, the skin easily blisters and tears from friction. It causes deformities at its most extreme.

There is no cure, just daily wound care and pain management.

Fillerup has to be more careful during the summer months. Like thousands of college students, Fillerup gets around on a bike or by foot.

"I really just mellow out. I limit walking. I have my bike, I don't have a car, so I bike everywhere," said Fillerup.

He has to be careful because he lacks the protein that anchors the skin's layers together.

"I break out into blisters under intense heat or friction," said Fillerup.

Fillerup was born with a milder form of EB, called symplex. It mostly affects his hands and feet, but a breakout can make his skin blister or peel. Four of his 11 siblings have the genetic disease.

"When I go clothes shopping, I make sure the seams inside the clothes aren't too deep, because that will cause irritation, it will just dig in and cause an outbreak," Fillerup.

It was tough growing up. He was excluded. Now he knows his limits, but it's not easy.

"I'll go out and play and stuff, but there will be a time in the middle of a game where you just, you stop, that's it, and then I'll just go chill," said Fillerup.

Near his bed are supplies to treat his skin. When it's hot, he wears sunscreen to prevent burns that lead to blisters and worse. But he's determined to live a full life even if it means hiking at night.

"When you're so used to pain your whole life, there comes a point where you just need to accept it and just keep going on; everyone has their challenges. I think with any sort of disability out there, people just want to be accepted, we want to be treated equally," said Fillerup.

EB is genetic. It can affect men and women from every racial and ethnic background.

Fillerup and friends support awareness for what they call, "The worst disease you've never heard of."

Click here to learn more about EB.

close video ad
Unmutetoggle ad audio on off