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‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

‘Help!’ I banged on the wall. My parents were downstairs. I reached for my nebulizer, but quickly realized something was wrong. This is when I remember feeling very calm and a sense of peace.’: Young woman learns ‘lesson’ after near-death experience from whooping cough

“Before bed, my dad asked if I needed to go the the hospital. As a stubborn 19 year old, I somehow talked my way out of it. I told him I was ‘fine’. The next thing I remember, my parents were rushing downstairs. They immediately tried to put my nebulizer mask on, but for some reason I was pushing it away. I woke up in an ambulance. I still feel guilty about that night.”

‘I did a quick 20 minutes on the elliptical at the student gym. When I woke up in the morning, I couldn’t lift my head.’ Woman describes freak accident after typical gym workout

“I was only 18. I had my whole life ahead of me. I was a freshman at my dream college, making friends, and discovering myself. I knew my life and body would never be the same. I could no longer walk and fell to the ground. The pain was unbearable. The workout was nothing I hadn’t done a hundred times before.”

‘I was sent home alone in an Uber in the middle of the night. ‘Just tell me your name!’ I couldn’t remember for the life of me what it was. All I could do was cry. That’s the only thing I remembered how to do.’

“I’ll never forget how I felt. I seemed hungover, except that wasn’t the case. My doctor told me, ‘Have you ever thought that it might be all in your head?’ Everything began to take a turn. I was once the quick-witted friend who always had a joke. Now I was the girl in the back of the classroom, crying because I didn’t know how to be a person anymore.”

‘I was out at a restaurant. ‘I’m not feeling well,’ I said. I knew something was wrong. Shaking, I excused myself and drove straight home. When I got back, my world crumbled around me.’

“I crawled to the bathroom. I couldn’t stand up without blacking out. I was paralyzed. I was supposed to be getting ready to go off to college with friends and I suddenly found myself unable to get out of bed. The wheelchair made others roll their eyes. ‘You don’t need that,’ they said. ‘Faker.’

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