Recessive Dystrophic Epidermolysis Bullosa

‘You look like you’ve been mauled by a gorilla. What happened to you?’ I lied. She didn’t deserve to know.’: Woman with terminal genetic condition embraces her scars, ‘Look how hard my body works to keep me alive!’

“I was leaving the grocery store. An older woman was staring at me. I felt the familiar rush of blood heat my cheeks and anger rise in my throat. Instead of asking questions about a body that wasn’t hers, she smiled widely. ‘I think I saw you in a magazine!’ I exhaled and laughed, confirming that she had. My scarring looks like burns. This is ‘the worst disease you’ve never heard of.'”

‘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.”

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