"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," Lucy Beall said.
The faces of the medical professionals in the Austin delivery room at Seton Hall Hospital changed from ones of delight to those of concern shortly after Lucy Beall was delivered. The 6-pound, little infant girl had chunks of skin missing around her mouth and was covered in raw, red blisters.
She was born with epidermolysis bullosa, an extremely uncommon genetic condition that results in excruciating blisters at the least touch and affects about 200 people in the United States every year. Beall, now 24 years old, defies all expectations and fights for herself and other people with the condition despite being expected to die in infancy, per PEOPLE. "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 says. "I want people to see that I'm so much more than just my scars."
Dr. James Feinstein, Beall's childhood doctor and the pediatric director for the Epidermolysis Bullosa Multidisciplinary Program at Children's Hospital Colorado in Denver explains, "There's a daily challenge for patients living with EB — it's a very painful and overwhelming disease." Given her life-threatening situation, Beall's doctors opted to perform a specialized—and risky—surgery to insert a small balloon into her throat when she was 17. In five months, Beall shared, she gained back all her weight, adding, "I was healthy for the first time since I was 13."
Beall studied art history at the University of St. Andrews in Scotland before moving abroad after receiving her diploma in 2016. "My body might be limited, but my mind isn't," she says, "So I decided I wanted to let that take me as far as it possibly could."
Beall, who resides in Cambridge, England, began posting pictures of her scars on social media and within a year had 20,000 Instagram followers. This resulted in modeling assignments for magazines including Cosmopolitan UK and Vogue Italia. "I decided to confront the negative feelings I had about my body and turn them into something positive. 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 raise awareness and funds for EB research by highlighting EB organizations she works with, such as DEBRA UK and the EB Research Partnership. Beall and her family also established their foundation, the Beall Family Endowed Fund for EB. "I hope my efforts can improve the daily lives of people with EB and raise funds for medical necessities," she says.
Beall is now looking forward. She already holds a first master's degree in art history from the Courtauld Institute of Art at the University of London, and she is eager to complete her second master's degree in medieval art history at the University of Cambridge in June. While continuing to live life to the fullest for as long as she can, she will continue to advocate for those who have EB. "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."
References:
https://people.com/health/model-24-rare-skin-disease-bares-scars-to-raise-awareness/
Cover Image Source: Instagram | @lucy_bealll
