Striving to be examples

PEORIA, Ill. -- Sam and Andy Conrad are your typical adolescents.

Sam, 12, likes the computer and anything that allows him to "socialize" with friends. Andy, 15, is active in sports, playing tennis and ruling the house in ping pong. Both are "A" students.

But the boys aren't your typical kids. Since they were very young, the boys and their parents, Angie and Bruce, have served as advocates. The boys suffer from a genetic skin disorder, Epidermolysis Bullosa, or EB. Over the years, the family has attended and hosted several fund-raising events for the Dystrophic Epidermolysis Bullosa Research Association of America or "Debra."

At least 100,000 Americans, mostly children, suffer from the debilitating disease. The skin and mucous membranes of its victims are so fragile, the slightest touch can cause severe irritation and painful blistering. The fatality rate is high.

The Conrads said they feel blessed to help raise funds and awareness about the disorder.

"We've been really lucky," Angie Conrad said. "Many have much more painful experiences. We've seen kids die from this, so the boys are very well aware of death."

About 10 years ago, the boys were part of a video Debra used to educate people about the disorder. Four families with five children were involved in the video. Since the shooting of the video, two of the boys have died.

There are two types of EB, non-scarring and scarring. The non-scarring varieties can range in severity from seasonal blistering of the hands and feet to widespread blistering throughout the year. Blistering can appear on 75 percent of the body, inside and out.

The most severe forms of EB involve permanent scarring that can lead to general debilitation, cancer and premature death. Even the mildest forms of non-scarring EB can make daily life hard.

Scarring EB is characterized by open sores and blisters that heal slowly, if ever. The continuous blistering leads to scarring that causes disfigurement and immobilization of fingers, toes, arms and legs. Blisters, which eventually scar, also can form in the mouth, esophagus, throat and stomach.

For Sam and Andy, their condition falls somewhere in between.

When Sam was born, his left leg was so badly bent, with no skin from the knee down, the doctors told his parents they didn't think they could save the leg. Neither boy has fingernails; their hands, palms and fingers are covered with pink scars. Andy wears a leather glove when he plays tennis to protect his hand, because even the slightest friction can cause the skin to split.

Their knees and elbows are large patches of scars with some open sores. And their feet have often taken the brunt, with sores appearing on their toes. "With EB, the skin is missing fibers that hold the skin together," Angie Conrad said. "Andy and Sam have a few of those anchoring fibers. But it's still amazing how certain things cause damage to their skin that you wouldn't think," she said.

For example, Andy shaves, but his face doesn't blister or scar -- unlike his elbows, knees and feet. Bouts with chicken pox were unremarkable for both boys.

"We've been really lucky and blessed," she said. "Since the boys have a lesser severity of EB, they can be used as examples to other kids with EB."

And the Conrads know fund-raising is an important part of fighting this disease.

"In the 15 years since Andy was born, they've isolated the gene for EB," Angie Conrad said. "And Sam is involved in a research program where they are doing DNA research. They're really great kids. They never feel sorry for themselves. They see kids so much worse off then themselves ... they're grateful to help others."