Scar Tissue

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"I get a lot of asked, if I feel like I'm on Borrowed Time . I definitely do not - it is My Own . And I'm going to use it to The Best of my ability. "

Lucy Beal Lott is 20 and lives with a rare disease called (EB).

It means that your skin can rip and bladder, of the act even at the slightest touch, and Lucy has often to tape, painful wounds.

Young People with EB are sometimes called "butterfly children" because their skin is fragile like a butterfly's wings.

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

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

It also has an impact on Lucy can be internal - for example, she had tissue multiple neck surgeries during their teenage years for the treatment of scars.

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

It is estimated that More Than 500,000 worldwide.

Lucy , who is studying originally from Austin, Texas, currently at the University of St. Andrews in Scotland. She says that EB was the first diagnosis when she was born, without skin in some places on your body.

"you knew that something was really wrong when a nurse removes a monitor from my skin, and it took the whole patch of the skin away with it," says beat Radio 1 News.

'is It like My Shadow ,"

"EB grew up with me like My Shadow ," says Lucy . "I have the name of my condition, and the word 'terminal' at the same Time , I learned My Own name. "

missing But far to define it so that the state of your life in a negative way, Lucy has The Opposite approach.

you will be enjoyed a positive voice for suffering, and has contributed to the awareness raised, appear in the magazines, what is a Ted talk, and has just completed her first Novel while still studying.

the attributes of their journey to the fact that her condition led to her missing school as a child. "I loved the school. I was a strange child. I would have you so excited, miss that I had to learn," she says.

"I saw that the only thing that the EB was not the limit for me, learning was my ability to. "

Lucy also posts pictures of herself on Instagram, she says, this is a good way to connect with other human diseases with a variety of skin.

"a teenager is hard enough, but one that looks different, is very, very difficult," she says.

"So, if you have a teenager can, someone who looks like they can help in the media, it really has to be seen. "

Now, she gets messages from people All over The World , the visible skin conditions such as hers.

"I Wake up Every Day with people who tell me: 'Thank You ', what makes my heart so full. "

"you are an amazing group of people'

Lucy 's not a behavior unique among the EB community, according to Caroline Collins, the Director of research at the EB charity Debra.

"they are some of The Most positive and future-oriented Young People I've ever met," she says.

"When I look at how many of them go through school, go to University, career and life The Best life that you possibly can, in The Face of adversity, I'm amazed, to be honest. You are an amazing group of people. "

But the fact is, EB is that it shortens the life of the people.

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

The extreme form of the disease, junctional EB called, is the rarest.

Lucy was born in Texas, but lives in Scotland

Caroline Lucy is a leading event, also, with other EB specialists from All over The World in London is next week - it is the largest of its Kind .

"We have to be done a long way in The Last few years," says Caroline, "but more research. Since it is a genetic disease, you can shoes at the end with some Kind of genetic treatment, and these treatments are in their children.

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

"Other Young People can go and live their teens and 20s, in their 30s or 40s. "

But for Lucy now, it's All about focusing on The Future .

you get what seems to an endless list of goals: "I hope that I still have a lot more for awareness, this year. I apply for many internships, and I hope that I have my Master's soon.

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

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Source of news: bbc.com