People with 'Butterfly' Skin Condition Triumph Through Pain

Moving Ahead

In her sophomore year at Duke University, Barron started its first ever student disability advocacy group, the Duke Disability Alliance. It works to raise awareness and accessibility for disabled students on campus and is in its third year.

Barron plans to graduate in May, take a year off to do advocacy work and then head back to school for a master's degree in public administration.

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"I think it's really important to have someone on the ground working who has these conditions," Barron said.

She tries to appreciate every day her pain is not making it hard to move, but she knows her health could get worse. Many people with epidermolysis bullosa don't live past 30 because of internal complications like cardiomyopathy and an increased risk of skin cancer, but she doesn't think about that.

"That's one of the hardest things, to keep going thinking, 'Oh my gosh, I'm only supposed to live until I'm 30,'" she said. "But then again, I wasn't supposed to make it out of the hospital. At some point, you have to let go of the expiration date mentality, and the world keeps turning. You have to make the most of it and achieve some sort of normalcy -- whatever normal may be for you."