11/05/2020
LUCY // February 2020
Lucy lives with a genetic condition called Epidermolysis Bullosa (EB) which causes her skin to blister easily. This leaves her body covered in open wounds and several scars, particularly evident on her hands, elbows, knees and feet. Told by several doctors throughout her childhood that she would be lucky to live to 18, she is now 21 - and with many accomplishments already under her belt.
Speaking to Lucy back in February, I learned that scar tissue constricts skin as it heals, and when a body is covered in scars, this can be not only painful, but also life threatening. Skin tightening around Lucy's throat risked her choking to death, so surgery on her oesophagus was required. More surgery ultimately leads to more scarring, and so it becomes a cycle. Lucy's most recent surgery was in August 2019 on her right hand. The scar tissue had been forcing her fingers into a fist shape, so the aim of the surgery was to straighten them out. Using skin from her previously unscarred left thigh, the surgery then left two parts of her body vulnerable to infection. It worked - initially - but after a few months, Lucy came to accept that it was not a permanent solution, and can now see that her fingers have started to revert to their previous form. No alternate solution is currently available.
The wounds on Lucy's body can be similar to third degree burns. A 'normal body' has enough energy to fight off infections effectively, but a body with EB has a compromised immune system. Lucy needs to consume extra calories – some of which are used just to keep her alive – the rest of which are used to constantly fight off potential infections from so many open wounds. A common cause of death in a child with EB is being unable to fight off an infection, but the risk in adulthood also extends to skin cancer.
With such a short life expectancy, I had wondered why she wanted to invest so much time into her education. Having clearly excelled enough in American schooling (she's a Texas girl) to get a place at a prestigious university (St. Andrew's), via a competitive placement at Sotheby's, London in 2016, her response was clear – “EB couldn't touch my education. Hard work pays off, unlike with my body”, she laughed.
In 2016, Lucy wrote an article about living with EB which she pitched to Huffpost. The publication of this led to more publicity over the following years, including features with the BBC, the Daily Mail and smaller, independent press – even giving her own Tedx Talk last year. She also volunteers her time as a media ambassador for EB charity Debra.
Lucy has laughed at the notion of being labeled “an underwear model” - the fact that many of her shoots have been taken wearing minimal clothing has surely been to highlight her scars, but she insists that this is not a career move and is working towards her dream job of working in a museum in a research or curatorial position. Lucy continues to share her story and pictures of her body as she feels a certain sense of responsibility to both help others with the condition, and to help educate those oblivious to it. Growing up, Lucy found it important to have role models to look up to, but unfortunately, due to the nature of the condition, some role models have not made it far into adulthood.
Lucy may look different, but she doesn't want any pity. In an Instagram post, I saw one follower comment “I am so sorry for you” - “Don't be sorry”, Lucy replied - “I love my body!”. Lucy perfectly encapsulates something we'd all do well to remember – our body is just a shell which carries our spirit. We are our hope, our passion, our strength, our determination, our education and our love; Lucy carries all of these things in abundance.
Find out more about EB from Debra's website:
www.debra.org.uk
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