Student told she would ‘never be attractive’ by ex due to rare skin tearing condition defies cruel comments to become lingerie model
A student who was told she would ‘never be attractive’ by an ex due to her rare skin tearing condition defies cruel comments to become a lingerie model.
Lucy Beall-Lott, 19, of Fife, Scotland, has recessive dystrophic epidermolysis bullosa (RDEB) – meaning any friction can cause her skin to shred-off, leaving painful blisters and wounds.
Since she was diagnosed at a few hours old, she has needed to shield her fragile skin with bandages to prevent potentially deadly infection.
Growing-up she would hide her body, following the strangers stares and hurtful comments, including being asked if she was in a ‘horrific accident’ or bizarrely if she was ‘mauled by a gorilla’.
But after learning to embrace her condition and revealing her scarring online two-years-ago, Lucy, originally from Santa Fei in New Mexico, USA, started modelling on the catwalk, for lingerie brands and more.
Despite her wounds being visible, she is proud to show off her skin, never previously believing her condition would be considered ‘beautiful’.
Lucy, who studies Art History and Latin at the University of St Andrews, said: “I never thought I’d be doing underwear photoshoots. It’s incredible, the comments I have received so far, they have been amazing.
“Starting to think that someone like me can be associated with beauty can change future women’s perceptions of scarring, similar conditions and more.
“I’m used to comments where people have told me I looked diseased and things like that, so I was trying to change people’s perceptions.
“One of my exes told me he could ‘never be attracted to me’ because of my skin, it was very insensitive and a jerk move.
“When I was asked to do a lingerie shoot, I did think back to his comment that I could ‘never be attractive.’
“It’s a nice feeling and seeing how I’ve worked on my own body and I love myself enough to put my body out there like that.
“The catwalk was so empowering, I walked down the first one bare-foot, which I’ve never done in public due to being too self-conscious of my scarring.
“It was great to see that instead of people pointing or laughing, they were cheering, which was incredible. I would never have thought this could happen.”
Lucy has contended with RDEB since she was a baby, often needing bandages to protect her skin during younger years.
Anything from a fall to opening a jar, brushing her teeth and even humid weather, can cause her skin tear and blister, leaving open wounds.
While her condition has improved in adulthood she still has to cautiously deal with any injuries.
Lucy said: “If I don’t lance, drain and clean any blisters, they will continue grow and get really big. If the area isn’t treated I will have a big open wound.
“We have to take every precaution to make sure my injuries don’t get infected otherwise it can be fatal.
“I have to worry about daily activities that able-bodied people would not give a second thought to.”
Lucy’s condition even affects her eating, with scar tissue forming where food grazes her throat – which has required surgery to stretch her throat open.
Next year, she will need surgery to give greater dexterity in her hands.
Lucy says her scarring and wounds draws a lot of attention from strangers who often make judgements, not knowing about her condition.
Despite the difficulties she faces, she is embracing modelling opportunities most recently with a catwalk for Label Press and photography sessions by Ula Rustamova.
Now knowing she has ‘nothing to hide’ she is trying to inspire others.
Lucy said: “I have had really positive, uplifting comments all the way to the extremely judgemental and callous remarks, as you can imagine.
“It’s frustrating because people make comments without knowing me. On a night out recently, I was referred to as the ‘girl with no hands’
“With modelling, I can present myself however I want. It’s nice to think I have these opportunities that I never would have dreamed were possible until now.
“After photoshoots people tell me how proud they are of what I’m doing, not just students but fashion designers too.
“It shows how much my mindset has changed and body confidence has grown.”
Despite initial challenges during dating, Lucy found Douglas Boler, 19, who has made her feel comfortable and wants to remind others with differences that beauty is more than skin deep.
She added: “Dating can be anxiety inducing for anyone but for those with visible disabilities it can feel a bit impossible due to the fear of judgment.
“I was very scared when I began to date Douglas as I was unsure what he would do when he would inevitably find out the extent of my condition, but he has been so supportive and understanding.
We are more than our appearances and I am lucky to have found someone who realizes that.”
Epidermolysis bullosa is caused by a mutation in the genes and affects one out of 20,000 births, meaning 200 children are born with the condition every year
There is currently no cure for Lucy’s sub-type, recessive dystrophic, which is one of the rarest forms of the connective tissue disorder.
To find out more information or to donate visit: www.debra.org.
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