Lucy Beall’s parents were expecting a fairly normal and straightforward birth. But when Lucy was born, the entire room was shocked. She weighed just six pounds and her skin was raw, blistered, and (in areas near her mouth) missing in patches. After running some tests, Lucy was diagnosed with dystrophic epidermolysis bullosa (DEB). Doctors told her parents that Lucy would most likely not survive the year. However, Lucy not only survived, but has thrived. In a People article, shared via Yahoo! News, 24-year-old Lucy is now a model, raising awareness and funds for epidermolysis bullosa research while also highlighting the importance of self-love.

Lucy’s Story

Growing up, Lucy and her family often visited therapists. She and her mother Elizabeth even moved to Denver, CO to be closer to the specialists. When Lucy was a teenager, she also had to undergo surgery – in which a balloon was popped in the throat – to address throat strictures. A throat stricture is a narrowing or abnormal tightening of the throat. In this case, Lucy’s blisters were the cause. Her strictures made it hard to eat, leading Lucy to be severely underweight. Surgery was beneficial and successful. Just months following her surgery, Lucy was once again able to eat and gain weight.

Eventually, Lucy left the United States to study art history at the University of St. Andrews in St. Andrews, Scotland. Outside of this, Lucy has also received a Master’s degree in art history from the University of London and is pursuing a second Master’s degree in medieval art history from the University of Cambridge.

In 2019, she came to realize that she had nothing to be ashamed of. Instead of disliking her body, she wanted to champion it; she wanted to love and support herself as she deserves. So she began posting photos on social media that highlighted her condition. The goal? To show that she was more than just a rare condition, more than just scars.

This message resonated not just with others within the rare disease community, but with others on a grander scale. In fact, companies and publications such as Vogue Italia even began asking Lucy to model for them. And while modeling brings her much joy, and she hopes to continue in the future, Lucy also views her social media platforms as an avenue for continued EB awareness.

What is Dystrophic Epidermolysis Bullosa (DEB)?

Dystrophic epidermolysis bullosa is a rare inherited disorder that causes fragile, easily blistered skin. Normally, the COL7A1 gene encodes for type VII collagen subunits, which help provide strength and structure to connective tissue. In DEB, COL7A1 mutations either reduce or totally stop this collagen production. Dystrophic epidermolysis bullosa is separated into different subtypes: dominant (DDEB), recessive generalized and localized (RDEB-gen and -loc), or severe generalized (RDEB-sev gen).

Symptoms vary based on subtypes. For DDEB and RDEB-gen and -loc, symptoms can include:

• Blistering on the hands, elbows, knees, and feet
• Mild scarring
• Malformed or missing fingernails and/or toenails

Finally, symptoms of RDEB-sev gen, the most severe and classic form, can include:

• Widespread blistering and areas of missing skin at birth
• Blisters over the entire body, as well as mucous membranes
• Severe scarring
• Difficulty chewing and swallowing
• Slowed growth
• Chronic malnutrition
• Malformed or missing nails
• Joint contractures and restricted mobility
• Eye inflammation
• Vision loss
• Fused skin between the fingers and toes
• Increased risk of squamous cell carcinoma

Currently, no cure exists for epidermolysis bullosa.