Epidermolysis bullosa causes blisters at the slightest contact and can be incredibly painful.
Lucy Beall is living with a rare genetic disorder that she wants more people to know about. The 24-year-old model was expected to die as an infant but she's beating the odds and living her life the best way she can. When she was born doctors grew concerned when they saw the infant with raw, red blisters on her skin. They also noticed missing patches of skin around her mouth. She was diagnosed with a life-threatening rare genetic disorder and the doctors told her parents that she would be lucky to survive even a few months. Now, she's living to tell her story.
Beall was diagnosed with Epidermolysis bullosa which affects roughly 200 people in the U.S. each year. According to EB Research, people with the condition lack critical proteins that bind the skin's two layers together. This means their skin tears apart, blisters, and shears off and this in turn results in severe pain and wounds that may never heal. Beall has dystrophic epidermolysis bullosa, a rare form of EB, that affects the inner layer of skin (dermis). Health professionals call the condition a very painful and overwhelming disease.
Beall hopes to raise awareness about the rare disorder and is advocating for herself and others with the condition. "I grew up knowing that my condition didn't just mean a more difficult life, but possibly a shorter one, and it was a very heavy burden," Beall told PEOPLE. "I want people to see that I'm so much more than just my scars." She wants to fight for people with EB for as long as possible.
After posting pictures of her scars on Instagram she ended up getting modeling gigs with big publications. "I decided to confront the negative feelings I had about my body and turn them into something positive," she shared. "I wish I could go back and tell my teenage self that in a few years, the legs I hated so much would get me into Vogue."
Beall is also promoting EB charities on her page including DEBRA UK and the EB Research Partnership, who she works with to help raise awareness and funds for research. "I hope my efforts can improve the daily lives of people with EB and raise funds for the medical necessities. One of the biggest takeaways from living with something as scary as EB," she said, "is that whenever I'm happy, it's really all I want."
As for her own personal goals, she is hoping to become an art history professor someday. Beall plans on living every moment and looking forward to the future and living "in a little cottage in the countryside with ducks, my dog and my boyfriend and just be happy."