“Although some days are still difficult, I love my scars. I love to see what my body has and will continue to overcome to keep me alive. I am proud of them, and I am proud of myself.”
Twenty years old, Lucy Beall Lott is reaching out to share her story about living with a rare condition known as ‘Epidermolysis Bullosa’ (EB) in the hope of supporting fellow sufferers, raising awareness and seeking to change how society views differently-abled individuals.
Epidermolysis Bullosa is an inherited skin disorder which is caused by a faulty gene that makes the skin very fragile. Any trauma or friction to the skin can cause open wounds and blisters.
Estimations suggest that more than 5,000 people are living with the incurable condition in the U.K. and 500,000 people worldwide.
The main symptoms of Epidermolysis Bullosa include:
- skin that blisters easily
- blisters inside the mouth
- blisters on the hands and soles of the feet
- scarred skin, sometimes with small white spots called milia
Epidermolysis Bullosa is most commonly diagnosed in babies and children as the symptoms are often obvious from birth.
Young people with the condition are often called “butterfly children” because their skin is fragile like a butterflies wing.
The condition represents itself in 3 different forms depending on the severity,the areas on the body that the blistering occuand which layer of skin is affected.Lucy has recessive dystrophic Epidermolysis Bullosa where the symptoms range from mild to severe.
Lucy, originally from Texas and now studying at a university in Scotland was diagnosed with the condition at birth when she was born without skin in some places on her body.
“They knew that something was really wrong whenever a nurse removed a monitor from my skin, and it took the entire patch of skin away with it”.
Currently there is no cure for Epidermolysis Bullosa which means many people with the condition suffer vast amounts of pain with minimal treatment.
To try and relieve pain and prevent symptoms from arising, which could lead to complications developing such as infection, here are some things sufferers can do:-pop blisters with a sterile needleapply protective dressings avoid things that make the condition worse,
take appropriate strength of medicine depending on the severity of the condition not walk long distances (this can cause blisters to form on the soles of your feet) avoid everyday knocks, bumps and scratches, keep as cool as possible in warm weather, avoid clothes that fit tightly or rub against the skin to try to prevent blistering. Wear clothes made from natural fabrics,
like cotton choose comfortable shoes that fit well and don't have lumpy seams inside.
Lucy has become a positive voice for her fellow sufferers.
She raises awareness, features in magazines and has just finished her first novel- all whilst studying and not letting her condition define her life in a negative way.Lucy has defied stigmas surrounding disabilities by being a full time student, working in London art auction houses alongside modelling, public speaking and writing.
Lucy hopes to develop the discussion on visible disabilities and how those with disabilities are portrayed by the media.
Lucy currently does this by posting pictures of herself on Instagram, as it is a great way to connect with other people living with a wide range of skin conditions.
She says “It's hard enough being a teenager but being one that looks different is very, very hard,".
"So if a teenager can see someone who looks like them in the media, it can really help."“I get asked a lot if I feel like I'm on borrowed time...
I definitely don't - it's my own. And I'm going to use it to the best of my capabilities."
You can hear Lucy speak about her condition on Youtube - https://www.youtube.com/watch?v=5liNas8D8PY
You can follow Lucy on her Instagram account - https://www.instagram.com/p/B0GZOVJlQXj/?hl=en
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