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

‘I choose to show the body I was given,’ the 24-year-old says.
Lucy Beall

Lucy Beall


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.

“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.

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.

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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Ananya Panchal
ANANYA PANCHAL

Ananya Panchal is a writer on the Lifestyle and Trending News team for SI Swimsuit, where she covers fashion, beauty, pop culture and the internet’s favorite personalities and trends. She joined the brand in 2022 after roles at Bustle, the San Francisco Chronicle and the TODAY Show. Panchal loves to write about fashion in all its forms—from standout runway moments and evolving street style to the best accessories to elevate each season’s wardrobe (she rarely goes anywhere without a stack of jewelry and a coffee in hand). A self-proclaimed beauty fanatic, she’s always on the hunt for must-have products and loves breaking down viral trends. Her favorite series at the moment is spotlighting female founders and the stories behind the brands they’ve built—especially those shaping the future of fashion, wellness and tech. She is based between New York City and San Francisco and, when she’s not writing, can be found rewatching One Tree Hill, playing sudoku, trying new restaurants or ranking her favorite Disney Channel Original Movies. She holds a bachelor’s degree in communications and journalism with a minor in criminal justice from Boston University.