“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.”
‘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
‘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 got caught in a snowstorm. My car tipped off a mountain road and landed in a 15-foot ravine. I grabbed my dog, zipped her in my jacket, and scrambled up a hill.’ Car accident triggers woman’s ‘tonic clonic’ seizures
“It took them two days to find my white car in all the fresh snow. Surprisingly, nothing was broken. Once thing’s seemed to be falling into place, that’s when my first seizure happened. I went face down onto the hardwood floor.”
‘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 don’t think mom is breathing, I fell asleep and I don’t think she’s breathing.’ I called 911. My dad and rushed to my childhood home. But I knew. Then I heard the medics say, ‘That’s it, call it.’
“I made her coffee and we sat together like we always did in the morning and chatted. Later I took her home, gave her medicine, and kissed her goodbye. I tried calling the next day, but was told she was ‘resting.’ My heart had already broken.”
‘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 love when you are healthy, and can play with me,’ my son said. That CRUSHED me. I was forced to observe my son from a distance, watching his life from afar. I couldn’t join in.’
“When my husband and I decided to have a second child, crap hit the fan. I felt like a failure, yet nothing was ‘officially’ wrong with me. I would overdo it just to show him I was a good mom. I would regret it later.”
‘He asked, ‘What parts do you have?’ I said, ‘EXCUSE ME?’ I was uncomfortable being interrogated. He pressured me. I refused. He decided putting his hands on me was the ‘right’ thing to do.’
“I met a doctor I hadn’t seen before. I lifted my shirt to show him. Accidentally, I lifted it a bit too far, revealing my scars. He stared. I knew he was staring. Instead of doing the right thing, he decided to ‘find out for himself.’”
‘The beds around me emptied and my eyes clouded with tears. I knew something was wrong. It felt like I was giving birth. I tried to muffle my cries.’
“My world seemed to be falling upside down. Human hands felt like knives. I pushed back, knowing something was not right. The doctors and nurses were completely puzzled.”
‘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.’
