Lucy Beall was born along 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 the 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 particular Seton Hall Hospital delivery room in Austin went from joyful to concerned. The tiny, 6-lb. baby girl has been covered in raw, red blisters and was missing patches associated with skin around her mouth.
Within days, doctors had diagnosed her with epidermolysis bullosa (EB) and told her stunned family that typically the baby girl would be lucky to survive even a few months. “Lucy’s birth completely changed our lives, ” says the girl mother, Elizabeth Beall, 58, a photographer and designer. “We never imagined that will such a new devastating, incurable disorder could even exist. “
Beall has an exceptionally rare form of EB, called dystrophic epidermolysis bullosa , which affects this 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.
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 has been 17 weighed less than 100 lbs. and was on the verge of needing a feeding tube. “I got really sick. inch
There’s a daily challenge for patients living with EB — it’s a very painful and overwhelming disease, inches 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 unpleasant blistering externally and internally, often on the lining of the particular throat.
Given her life-threatening situation, Beall’s doctors opted in order to perform the specialized—and risky—surgery to insert a small balloon into her throat “at typically the level where the narrowing is, ” explains Feinstein. “Then they pop open this balloon, and it breaks often the stricture open. Some associated with Lucy’s blisters were longer than we typically expect, ” he adds. “So they had to be able to try different approaches and finally insert a longer balloon— and they were successful. very well
Within five months, “I gained back all my weight, and I was healthy for your 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, that attended the exact University regarding St . Andrews in Scotland for art history plus 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 started posting photos of the girl scars upon Instagram in 2019. That led for you to modeling jobs for publications like Vogue Italia in addition to Cosmopolitan UK. “I decided to confront the negative feelings I had about my body and turn them in to something positive, ” says Beall, who else started sharing photos involving her scars and, within a year, had gained 20, 000 followers on Instagram. “I wish I could go back and even tell the teenage self that within a few years the legs We hated so much would get me directly into Vogue . inch
Beall also uses Instagram to help promote EB charities such as DEBRA UNITED KINGDOM and the particular EB Research Partnership , who the girl works with to help raise awareness together with money with regard to research. “I hope our efforts can improve typically the daily lives of people with EB and additionally raise funds for the medical necessities, micron says Beall, who, in 2014, also launched the woman own foundation with your ex family, this Beall Family Endowed Fund for EB .
These days Beall will be looking ahead. With a new first master’s degree inside art history from the University of London’s Courtauld Institute of Art already under her belt, she’s looking forward in order to earning the second, in medieval artwork history, throughout June, through the College of Cambridge. “Education has always been a really big deal to be able to me because I missed so much school when I had been little, ” she states.
In between her studies and modeling auditions, the lady enjoys spending downtime along with her boyfriend of five years, Douglas Boler, 24, a geologist, whom your woman met at St Andrews, and their dog Saxon. She states she hopes to one day become an art background professor not to mention “live in a little cottage in often the countryside together with ducks, my personal dog and also my partner and just be happy. inch In the meantime, she’ll keep fighting for people with EB— and living every minute to the fullest for as long as the woman can. “One of the biggest takeaways coming from living with something as scary as EB, ” this lady says, “is that whenever I’m happy, it’s really all I want. inches
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