lifetime illness

‘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.'”

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