A student is left looking like she has been ‘attacked by a gorilla’ as a result of a rare condition which causes her skin to shed.
Lucy Beall Lott, 17, from Santa Fe, was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB) when she was born.
Her condition means just picking objects up can cause her fragile skin to fall off, leaving her with painful blisters and wounds.
It also affects her throat each time she swallows – and can put her at risk of choking to death.
She’s suffered hurtful comments from strangers including that she would be ‘hot’ if it wasn’t for her scarred legs and arms.
Despite the vicious remarks, she’s adamant she has nothing to hide since and refuses to let her condition hold her back.
Lucy Beall Lott, 17, from Santa Fe, was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB) when she was born. Her condition means just picking objects up can cause her fragile skin to shred off, leaving her with painful blisters and wounds
Lucy, who’s studying archaeology in London, said: ‘When I’ve been wearing shorts I’ve had boys in a truck behind me say I would be hot if it wasn’t for my scarred legs and ugly baby hands.
‘The craziest thing I heard was when I was picking up my dog from the vet, in the waiting room a lady told me that it looked like I’d been mauled by a gorilla.
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‘It wasn’t a nice thing to say at all, I was upset and pretty mad at her because she didn’t care to find out about my condition and was very insensitive.’
‘I used to feel very self-conscious during my early teens, I was very aware of people starting at me.
‘But it’s got to a point where I’ve realised there’s nothing wrong my how my scars look.
She’s suffered hurtful comments from strangers including that she would be ‘hot’ if it wasn’t for her scarred legs and arms. She said someone had told her it looked as if she had been mauled by a gorilla
Since the age of 13, Lucy has needed surgery every two months to expand her throat because every time she swallows the skin becomes damaged. At her worst, she was left with a 3mm opening in her throat – putting her at risk of choking to death (pictured in hospital for the throat stretching surgery)
‘I never let my condition stop me though, I’m very active and adventurous despite knowing the damage I could do to myself.’
Just hours after she was born, doctors diagnosed her with RDEB – which affects one in 20,000 births.
Her form – which is caused by a mutation in the genes – is one of the most severe of the rare connective tissue disorder, but there is no cure.
To protect her during childhood, most of her body was wrapped in bandages but as she’s gotten older she wears them less and less.
Since the age of 13, Lucy has needed surgery every two months to expand her throat because every time she swallows the skin is severely damaged.
The friction from eating causes skin to move on her tongue – which in turn becomes a blister and then an ulcer.
At her worst, she was left with a 3mm opening in her throat – putting her at risk of choking to death.
To relieve her, surgeons inflated a small balloon to stretch the skin and scar tissue, widening space.
To protect her during childhood, most of her body was wrapped in bandages but as she’s gotten older she wears them less and less
Simple things like opening a jar can result in blisters, while rubbing her eye can cause a corneal abrasion.
WHAT IS DYSTROPHIC EPIDERMOLYSIS BULLOSA?
Dystrophic epidermolysis bullosa (DEB) is a rare inherited skin disorder.
The skin of those who have DEB is more fragile than normal. Minor injury causes blisters which often leave scars when they heal.
DEB can be mild, causing little more than minor inconvenience, but it can also be severe, affecting the mouth, gullet and eyes in addition to the skin.
DEB is not an infection, it is not contagious and it is not due to an allergy.
It is divided into two major types depending on inheritance pattern, either recessive or dominant.
There is currently no cure and treatment focuses on tackling the symptoms, providing pain relief, and preventing infection.
It is caused by faulty genes which produce collagen, a strong protein in the fibres that holds the skin together.
Complications of the condition include skin infections, blood poisoning, fusion of the finger and toe joints, malnutrition due to blistering of the mouth or throat, anemia, skin cancer and a constricted oesophagus.
Sometimes, even the climate can cause damage, as humidity makes her skin a lot more fragile.
If she was to fall over, her skin would tear off and painful blisters would form.
She is required to lance, drain and clean all of her blisters to prevent them from growing.
Lucy also has to take every precaution possible to make sure her injuries don’t become infected which could become deadly.
But she is determined not to be held back by her condition and now proudly reveals her scars as she feels she has nothing to hide.
Lucy said: ‘I’ve had really positive, uplifting comments all the way to the extremely judgemental and callous remarks, as you can imagine.
‘I don’t want to let anything stop me, if I was worried about blisters I couldn’t wear shoes, open jars and more, so I just adapt life around my condition.
‘It feels like the world is a landmine to me, it’s pretty bad but I work around it the best I can.’
Brett Kopelan, from the Dystrophic Epidemolysis Bullosa Research of America, said: ‘Those with RDEB generally live with a long list of complications and secondary illnesses that require multiple interventions from a range of medical specialists.
‘In addition to dealing with extremely fragile skin that blisters and tears from minor friction or trauma, internal organs and bodily systems are often severely affected.
‘It’s quite scary when you are faced with that reality.’
To find out more information or to donate visit: www.debra.org.