People with 'Butterfly' Skin Condition Triumph Through Pain


For 22-year-old Barron, the experience is all too familiar. She said she's been asked if she was contagious, and said she's very tactful about how she dresses to avoid making people uncomfortable about the open wounds on her skin.

"My heart sinks for these kids," Barron said in an email that she typed with her thumbs -- a skill she taught herself in the third grade. "So many times I fear revealing too much of my skin and bandages. ... I fear this very reaction if someone sees too much."

In a phone interview a few minutes later, she explained that people get "freaked out" by the open sores and it sometimes makes her feel like a leper. Although Barron, like many other children with epidermolysis bullosa, was initially worried about making friends in school, by the time she got to college she learned to ignore the stares, relax and let her real friends in.

She said her friends accepted her feeding tube (for extra nutrition) and her full-time nurse (for help with daily bandaging to avoid infection) without making her feel weird about it.

"Hanging out in my room, going out on weekends, it's just Megan -- and that's what I love about them, that they treat me that way," Barron said.

No Known Cure

Parenting children with epidermolysis bullosa is often a full-time job, and sometimes that job is expected to come to an abrupt end because the condition comes with many internal complications that often lead to early deaths.

When Courtney Roth gave birth in 2009, her son, Tripp, had mostly unblemished skin aside from a blister on his head. She would eventually learn that he had junctional epidermolysis bullosa, the most fatal type of the condition because it leads to loss of fluid and infection from so many open sores. Blistering of internal organs, malnutrition and other complications are also common.

So Roth started blogging to vent her feelings and chronicle the short time doctors told her she would have with her newborn, whose skin would blister no matter how well she bandaged his fragile body. No one expected Tripp to live until he was 2 years and 8 months old, or that the blog, "'EB'ing a Mommy" would win her recognition as an Reader's Choice Hero in 2011.

Roth, now 27, said mothering Tripp was trial and error the whole way because every wound would be different. Some would heal and others wouldn't. She found a community of other parents to help her through it, and she now offers her contact information to other parents of children with epidermolysis bullosa.

"These moms and these parents, they're yearning for somebody that's going through the same situation," she said. "It's probably one of the cruelest, hardest things to have to go through, to watch your child suffer like that knowing you can't do anything about it."

She said she rarely slept more than 20 minutes at a time, but she was fortunate that she didn't have other children and that she did not have to work during that time.

"I was always in his face," she said. "We just loved him. We loved him so much. I don't know if that's what kept him going. I know for a fact that he kept me going."

Tripp died in January 2012, but Roth isn't ready to read over her blog entries just yet.

"It made you think: If he could survive and smile and laugh and play, then there's nothing in the world to ever complain about or be upset about," she said. "I just miss him a lot."

Making Exceptions

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