Model, 24, with Rare Skin Disease Bares Scars to Raise Awareness: 'I Choose to Show the Body I Was Given'
guen fiore Lucy Beall
Lucy Beall was born with epidermolysis bullosa, a rare genetic disorder that affects roughly 200 people in the U.S. each year and causes painful blisters at the slightest touch. Expected to die at infancy, Beall, now 24, defies all odds and serves as a passionate and outspoken advocate 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 tells PEOPLE. "I want people to see that I'm so much more than just my scars."
Just moments after Beall was born, the expressions on the faces of the doctors and nurses in the Seton Hall Hospital delivery room in Austin went from joyful to concerned. The tiny, 6-lb. baby girl was covered in raw, red blisters and was missing patches of skin around her mouth.
Within days, doctors had diagnosed her with epidermolysis bullosa (EB) and told her stunned family that the baby girl would be lucky to survive even a few months. "Lucy's birth completely changed our lives," says her mother, Elizabeth Beall, 58, a photographer and designer. "We never imagined that such a devastating, incurable disorder could even exist."
Beall has an exceptionally rare form of EB, called dystrophic epidermolysis bullosa, which affects the dermis, or the inner layer of skin. During her teenage years, Beall and her mom moved from Austin to Denver, where she was closer to her EB specialists.
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As a teen, she had about a dozen surgeries to alleviate throat strictures, a narrowing caused by EB blisters. "It was very difficult to eat and maintain weight," says Beall, who by the time she was 17 weighed less than 100 lbs. and was on the verge of needing a feeding tube. "I got really sick."
There's a daily challenge for patients living with EB — it's a very painful and overwhelming disease," says Dr. James Feinstein, Beall's childhood doctor and the pediatric director for the Epidermolysis Bullosa Multidisciplinary Program at Children's Hospital Colorado in Denver. A lack of collagen connecting the top and bottom layers of skin causes painful blistering externally and internally, often on the lining of the throat.
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Given her life-threatening situation, Beall's doctors opted to perform a specialized—and risky—surgery to insert a small balloon into her throat "at the level where the narrowing is," explains Feinstein. "Then they pop open the balloon, and it breaks the stricture open. Some of Lucy's blisters were longer than we typically expect," he adds. "So they had to try different approaches and finally insert a longer balloon— and they were successful."
Within five months, "I gained back all my weight, and I was healthy for the first time since I was 13," says Beall, who graduated from high school in 2016 and began applying to colleges. "My body might be limited, but my mind isn't," adds Beall, who attended the University of St. Andrews in Scotland for art history and has lived abroad ever since. "So I decided I wanted to let that take me as far as it possibly could."
Currently living in Cambridge, England, Beall began posting photos of her scars on Instagram in 2019. That led to modeling jobs for publications like Vogue Italia and Cosmopolitan UK. "I decided to confront the negative feelings I had about my body and turn them into something positive," says Beall, who started sharing photos of her scars and, within a year, had gained 20,000 followers on Instagram. "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 also uses Instagram to promote EB charities such as DEBRA UK and the EB Research Partnership, who she works with to help raise awareness and money for research. "I hope my efforts can improve the daily lives of people with EB and raise funds for the medical necessities," says Beall, who, in 2014, also launched her own foundation with her family, the Beall Family Endowed Fund for EB.
Kathryn Chapman Lucy Beall
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These days Beall is looking ahead. With a first master's degree in art history from the University of London's Courtauld Institute of Art already under her belt, she's looking forward to earning her second, in medieval art history, in June, from the University of Cambridge. "Education has always been a really big deal to me because I missed so much school when I was little," she says.
In between her studies and modeling auditions, she enjoys spending downtime with her boyfriend of five years, Douglas Boler, 24, a geologist, whom she met at St. Andrews, and their dog Saxon. She says she hopes to one day become an art history professor and "live in a little cottage in the countryside with ducks, my dog and my boyfriend and just be happy." In the meantime, she'll keep fighting for people with EB— and living every minute to the fullest for as long as she can. "One of the biggest takeaways from living with something as scary as EB," she says, "is that whenever I'm happy, it's really all I want."
For more about Lucy Beall, pick up a copy of PEOPLE, on newsstands Friday
