A student with skin as fragile as butterfly wings says she has to bath in bleach to every day to keep infection free. Noelle Hermes, 21, has epidermolysis bullosa - 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, her condition means her nails have fallen out? and she has to take a daily 90-minute bath in bleach and sea salt to clean her wounds. "It is common with EB, because of constant scaring and wombs we lost the ability to grow nails because of the scaring and wombs that we have on our fingers. "It definitely makes it harder to open some things - it is weird as my friends go out a lot to get their nails done and I can join." Speaking about her condition as a child, Noelle said "I am the type of person, I won't tell you upfront when I see you but if someone asks me about it I am more than happy to share but I will never straight up and tell you. "When I was younger I would have bandages around my neck so It was hard to hide. "I appreciate when people ask as it shows they care to know and learn about you." "More vocal about it now then I was about it in the past, I want to raise awareness of the condition." But now Noelle, from Irvine, southern California, said: "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. "A lot of sports are very physical, it was way too high risk for me to play sports. "That was really tough, not being able to go out and play sports at my age, when you're younger you're having to figure out how to live with 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." Remembering what it was like living with the condition as a child, Noelle said: "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 even if they wouldn't say anything I would get a lot of stares at my bandages - I would cover up my bandages. "They would definitely say some things to me, and people would question it and be rude about it. "I think part of the reason why I don't remember things is that I don't like to think about it and I want to block it out. "More recently my hair is thinning, for the same reason as I don't have nails - people would make comments about my hair and stuff like that." Now, Noelle is using TikTok to spread awareness of the rare condition. She said: "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. She says the rare disease has made a huge impact on her life and it was challenging for her growing up. Every day Noelle has to change her bandages, to do this, Noelle will take a bath in bleach and sea salt which helps clean the wounds. Noelle said that her wounds are constantly opening and closing, with wounds on her arms, face, neck and across her chest, back, legs and feet. She said: "That takes around an hour and a half every morning for me to do, it is a very painful process. "It is definitely not fun as it cleans direct open wounds - it can sting and be very painful." Noelle said living with the condition can be "really tough" and said it is "hard" to have a condition where it is so visible. She said: "Obviously people can see it. "I don't really ever wear shorts or anything like that because I have wounds on my legs and stuff. "When I see people in the summer wearing shorts and stuff, wearing things that I can't - It can be really tough. "I am definitely self-conscious about my looks." Living with the life-threatening condition, Noelle is at higher risk of getting diseases and infections because of her open wounds and is at higher risk of developing skin cancer. She said: "My health can turn pretty quickly. "I was living in England for a year last year and I ended up in hospital three times in one year. "Because I am prone to infect
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