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Consultation - Butterfly Skin

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(@deborah)
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My 'butterfly skin' could kill me but I want to raise awareness for others

  • 18 January 2020
 
Lucy Beal LottImage copyrightLUCY BEAL LOTT

"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."

Lucy Beal Lott is 20 and lives with a rare condition called epidermolysis bullosa (EB).

It means her skin can tear and blister at even the slightest touch, and Lucy often has to bandage up painful wounds.

Young people with EB are sometimes called "butterfly children" because their skin is fragile, like a butterfly's wing.

"The question I get asked quite a bit online is: 'Does it hurt?' And I'm like, 'I mean, yeah. Open wounds can be quite painful'," she says.

"Right now, I also have a large open wound on my ankle, and I can really feel that."

It can also affect Lucy internally - for example, she had to have multiple throat surgeries during her teen years to treat scar tissue.

People with the condition can also die early. EB is genetic, which means Lucy inherited it and it can't be caught. There is no known cure.

The invention bringing a terminally ill man happiness

It is estimated that more than 5,000 people are living with EB in the UK, and 500,000 worldwide.

Lucy, who is originally from Austin, Texas, is currently studying at St Andrews University in Scotland. She says her EB was first diagnosed 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," she tells Radio 1 Newsbeat.

'It's like my shadow'

"EB grew up with me like my shadow," says Lucy. "I learned the name of my condition and the word 'terminal' around the same time I learned my own name."

But far from allowing her condition to define her life in a negative way, Lucy has taken the opposite approach.

She's become a positive voice for fellow sufferers and has helped raised awareness, appearing in magazines, giving a Ted talk and has just finished her first novel - all while she's still been studying.

She attributes her drive to the fact that her condition led to her missing school as a child. "I loved school. I was that weird kid. I'd get so upset that I had to miss out on learning," she says.

"I saw that the only thing EB couldn't limit for me was my ability to learn."

Lucy Beal LottImage copyright  LUCY BEAL LOTT

Lucy also posts pictures of herself on Instagram, which she says is a great way to connect with other people living with a wide range of skin conditions.

"It's hard enough being a teenager but being one that looks different is very, very hard," she says.

"So if a teenager can see someone who looks like them in the media, it can really help."

Now, she gets messages from people around the world who have visible skin conditions like hers.

"I wake up every day with people telling me: 'Thank you', which makes my heart so full."

'They are an amazing group of people'

Lucy's attitude isn't unique among the EB community, according to Caroline Collins, who's the director of research at EB charity Debra.

"They are some of the most positive and forward-looking young people I have ever met," she says.

"When I look at how many of them are going through school, going to university, having careers and living the best life that they possibly can in the face of adversity, I'm astonished to be honest. They are an amazing group of people."

But the fact of EB is that it shortens people's lives.

There are three main types. The form of the condition that Lucy lives with is recessive dystrophic EB, where the symptoms range from mild to severe.

The more extreme form of the condition - called junctional EB - is the rarest.

Lucy Beal LottImage copyrightLUCY BEAL LOTT
Image captionLucy was born in Texas but now lives in Scotland

Caroline is leading a meeting, which Lucy will also attend, with other EB specialists from around the world in London next week - it's the biggest of its kind.

"We've come a long way in the last few years," says Caroline, "but more research needs to be done. Since it's a genetic condition, you may end up having some sort of genetic treatment - and those treatments are in their infancy.

"For certain types of EB, it can be fatal within weeks or months," she adds.

"Other young people may go on and live through their teens and 20s, into their 30s or 40s."

But for Lucy right now, it's all about focusing on the future.

She's got what seems like an endless list of goals: "I hope to do much more for awareness this year. I have a lot of internships to apply for and I hope to get my masters soon as well.

"If it were up to me, I would just go to school forever."

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(@carliecannestroiectskin-com)
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Oh my gosh that is so scary, that someone's skin could be that fragile. I remember in highschool we watched this documentary in biology class about this guy who had the same problem but his skin kept falling off and it was like that his whole life. They said it was a genetic mutation.


   
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(@deborah)
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This is not an issue to be afraid to see a Dr. This type of disorder can be infected easily and it needs to be watched so it does not get infected. The mental side of this could be debilitating for people


   
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(@laurenjohnsoniectskin-com)
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@carliecannestroiectskin-com It is so scary! I can't imagine living with skin that fragile. 


   
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(@laurenjohnsoniectskin-com)
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@deborah Yeah I can imagine that this type of skin gets very easily infected. 


   
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(@deborahwatersiectskin-com)
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This young lady has a great attitude and I am happy she can connect with others you have the same disease. I had nit heard of this disease until this article so it is quite scary to know that people have to endure this all their lives


   
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(@keyonnastarksiectskin-com)
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It's so scary to think that someone could be so fragile and have to be cautious about doing their day to day routine. This young woman is amazing and strong to be able to share her story with the millions of people in a positive way, and be able to educate them about her skin condition. 


   
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(@abigailcochraneiectskin-com)
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I havent heard of this exact disease but something similar, where the skin sheds at an extreme rate, and the body cant keep up to produce more, so they are constantly left with huge open wounds and even a paper cut can be deadly. It is amazing the people with these conditions can remain to stay strong and shine a positive light on such a rough hardship. 


   
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(@abigailcochraneiectskin-com)
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Its amazing she is mentally capable to over come the hardship of this disease and fully live her day to day life without living in fear. 


   
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(@tristasensemaniectskin-com)
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Lucy seems to be such a strong minded person. I love her attitude and determination. I've never heard of EB before, It seems like such a hard condition to live with. I am so glad she has found a great support system. 


   
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(@tristasensemaniectskin-com)
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@carliecannestroiectskin-com I was thinking the same thing. I Immediately thought of her parents, having to see her skin come off as the nurse removed the monitor.. I just cant imagine that, I am shocked that I haven't heard about this before! 


   
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(@tristasensemaniectskin-com)
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@keyonnastarksiectskin-com I also thought about this, like how does she live everyday with this!? I am still in shock that this exists and that she was born with this! I feel like she must  have to wear long sleeves/pants/sock/shoes all the time, even at home to prevent more injury. 


   
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(@deborahwatersiectskin-com)
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@tristasensemaniectskin-com 

I had never heard of this and I wonder if there will ever be a cure. To know this is a lifelong disease is hard as I can't imagine it. I wonder if she being a teen is picked on. People can be cruel and its hard to just be a teen without a disorder or disease.


   
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(@cameranriddleiectskin-com)
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Having skin so fragile must be terrifying. Im way to clumsy. I always knock into things, my skin would just tear right off. 


   
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(@cameranriddleiectskin-com)
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@tristasensemaniectskin-com Ive never heard Of EB either. She is such a strong human for dealing with this and trying to help others.


   
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(@cameranriddleiectskin-com)
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@abigailcochraneiectskin-com These conditions are so scary to live with. You can have so many infections on the daily.


   
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(@deborahwatersiectskin-com)
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@cameranriddleiectskin-com 

The young lady in the article is very hopeful and brave. This can be a fatal disease and there are young people living with this everyday. Its hard to stay positive with a deadly or chronic disease


   
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(@paigebrickhouseiectskin-com)
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Its hard to comprehend how much a person with this disorder goes through. Its amazing that she has such an amazing attitude and doesn't let this disorder hold her back from pursuing something, and looking forward to her future. 


   
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(@paigebrickhouseiectskin-com)
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@abigailcochraneiectskin-com I couldn't imagine living with this disorder. I don't know how i would handle it mentally.


   
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(@paigebrickhouseiectskin-com)
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@keyonnastarksiectskin-com She really is an amazing person. Thats amazing that she has found such a great community and isn't going to stop pursuing her deams and goals.


   
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(@cameranriddleiectskin-com)
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Having EB seems terrifying. I couldn't imagine having a bandaid on and taking it off and it rips on your skin. So heartbreaking and scary. 


   
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(@cameranriddleiectskin-com)
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@paigebrickhouseiectskin-com It crazy how much she has to go through and deal with in her life. Learning her disorder when she was such a baby is horrendous.


   
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(@cameranriddleiectskin-com)
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@deborahwatersiectskin-com Ive never heard of this either. Teenagers would be so mean about it but they also have idea what its like to live wth this disease.


   
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(@student)
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I have never heard of this before, but I think her outlook is very inspirational. I hope that her efforts to spread awareness about EB can lead to a cure, or some form of relief for people that suffer from it.


   
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(@student)
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I have never heard of this before, but I think her outlook is very inspirational. I hope that her efforts to spread awareness about EB can lead to a cure, or some form of relief for people that suffer from it.


   
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(@student)
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@cameranriddleiectskin-com I agree, growing up with such fragile skin that you have to worry about the smallest things, like using a band-aid is awful.


   
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(@student)
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@tristasensemaniectskin-com I imagine it was super hard for her parents to watch her grow up with this condition. As a child I doubt she was able the understand the fragility of her skin and I'm sure that led to many instances that would've been terribly painful for her as well as her parents to witness.


   
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(@michaelagrayiectskin-com)
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I learned so many new facts while reading this article. I knew that skin could be sensitive but so fragile it could tear just at the touch? I never knew that. I definitely understand being a teenager that looks different or has visible differences from others, it can be very difficult. I really commend her for being able to share her journey and embrace the positive side of her condition. It is not easy to remain so positive about such a painful condition, but because she is able to she is encouraging other people to embrace their conditions. I look forward to reading up on this condition more have having a better understanding of how it affects the skin. 


   
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(@michaelagrayiectskin-com)
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@paigebrickhouseiectskin-com I agree, as I stated in my previous post I couldn't imagine the pain she goes through everyday. She keeps such a positive attitude, inspiring others around her everyday just by being able to embrace her condition.


   
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(@michaelagrayiectskin-com)
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@lanajacksoniectskin-com I definitely agree, it is impossible for a child to understand the nature of their disorder to that extent. As a woman who is constantly around kids and was expecting a kid myself I would never wish that on my child. Every parent wants a happy, healthy baby but unfortunately that is not always the case. At that point it is my job as a parent to explain to you the best way possible the extent of your condition so you can best understand. However, even giving my child the knowledge they need to live a comfortable life I would still be in agony myself knowing it is nothing I can do to fix my child's condition.


   
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