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This student’s skin is as fragile as a butterfly wing

"A lot of people need to know about this condition and if more people are aware then it can help with research, funding and finding a cure."

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SWNS via Daily Motion

By Ben Barry via SWNS

A student with skin as fragile as butterfly wings must bathe in bleach and salt every day to prevent infections.

Noelle Hermes, 21, from Irvine, California, has epidermolysis bullosa (EB), a rare condition that causes fragile, blistering skin, because her body doesn't produce collagen 7.

She was born with the condition and has grown used to her entire body being covered in wounds, from her head to her toes.

Playing sport is a total no-go and she has to take a daily 90-minute bath in bleach and sea salt to clean her wounds.

She said "When I was younger I would have bandages around my neck so It was hard to hide.

"My skin is as fragile as a butterfly wing."

"I have open wounds all over my body from my feet all the way to my head - it's not just external with the skin it is internal.

"I have had blisters in my mouth, sarcophagus tearing. I have had to get multiple throat dilations because my throat closes up sometimes.

"It really affects a lot of the body.

"Growing up it definitely was challenging, because my skin tears so easily, I could never play any sports.

"That was really tough.

"I used to get really bad wounds on my neck, my neck would sometimes have to be bandaged.

"I remember that being a really tough time, every time my parents would put the new bandages on, I would be crying - it is so visible and so gross looking.

"Little kids definitely don't have censorship, and even if they wouldn't say anything I would get a lot of stares at my bandages.

"People would question it, and be rude about it."

Now, Noelle is using TikTok to spread awareness of the condition.

"Even now I am still trying to learn about my condition, being out in public, I have to be more cautious about big crowds and bumping into people."

"Hardly anyone knows about EB so I just want to raise awareness and spread the word."

"A lot of people need to know about this condition and if more people are aware then it can help with research, funding and finding a cure because I know the doctors are getting close and making progress with finding new medicine and cures."

Noelle now studies majors in child development and film and TV at California State University, Fullerton.

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