Model Lucy Beall Is Bringing Awareness to the Rare Condition Epidermolysis Bullosa

Lucy BeallJannica Honey

Epidermolysis bullosa is a rare skin disease that causes painful blisters and affects approximately 200 people in the U.S. every year. Lucy Beall, a 24-year-old model who grew up in Texas, inherited the condition and serves as an advocate to those with the disability.

“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.”

Beall was diagnosed within a few days of her birth with a specific form of EB called dystrophic epidermolysis bullosa, which affects the inner layer of the skin. As a teenager, she moved from Austin to Denver with her mother to be in closer proximity to doctors who specialized in EB.

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“Lucy’s birth completely changed our lives,” her mother, Elizabeth Beall, said. “We never imagined that such a devastating, incurable disorder could even exist.”

Lucy’s doctors decided to perform a specialized surgery that involved inserting a small balloon into her throat to alleviate strictures that made it difficult and extremely painful for her to eat, causing her to lose a ton of weight.

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Within a few months of the successful surgery, she began to gain back her weight and strength.

“I was healthy for the first time since I was 13,” recalled Beall, who graduated high school in 2016. “My body might be limited, but my mind isn’t. So I decided I wanted to let that take me as far as it possibly could.”

She attended the University of St. Andrews in Scotland for art history and met her now-boyfriend of five years, Douglas Boler, there. The two live in Cambridge, England, with their dog, Saxon.

In 2019, Beall gained the courage to start posting her scars on Instagram and that eventually led to her discovery by a modeling agency. In September 2020, she was featured in Vogue Italia.

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Beall also uses her platform to raise awareness for various organizations working to support families and those suffering with the skin condition.

“I decided to confront the negative feelings I had about my body and turn them into something positive,” she said. “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.”

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