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.

"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."

  • 1
  • |
  • 2
  • |
  • 3
  • |
  • 4
Join the Discussion
You are using an outdated version of Internet Explorer. Please click here to upgrade your browser in order to comment.
blog comments powered by Disqus
You Might Also Like...
See It, Share It
PHOTO: Oscar de la Renta and Oprah Winfrey attend the Costume Institute Gala Benefit to celebrate the opening of the American Woman: Fashioning a National Identity exhibition at The Metropolitan Museum of Art, May 8, 2010, in New York City.
Rabbani and Solimene Photography/WireImage/Getty Images
PHOTO: Up in Ash: Mount Sinabung Erupting
Tibt Nangin/Anadolu Agency/Getty Images
PHOTO: Firefighters rescue a woman who got stuck in a chimney in Thousand Oaks, Calif.
Ventura County Fire Department
PHOTO: Apple Pay is demonstrated at Apple headquarters on Oct. 16, 2014 in Cupertino, Calif.
Marcio Jose Sanchez/AP Photo