EDS

‘Every time I gave birth, I awoke the dormant beasts inside me.’: Mom of 3 shares journey to Ehlers Danlos Syndrome, Lupus diagnoses

“I started wearing sunglasses indoors. My hair was falling out in chunks, my gums bleeding. Sounds hurt. The very smell of air made me sick. I was a shell of myself, withering away, barely hanging on. But then I thought of my little girl. She was so small, not even talking yet. How would she remember me? Who would teach her to do her hair? I had to stop planning my goodbyes, and start fighting.”

‘Can you step into my office?’ Anticipating an assignment, my research advisor abruptly stated, ‘You know you’re disabled, right?’: Woman diagnosed with Ehlers-Danlos Syndrome, POTS discovers identity after lifelong battle with chronic illness

“After months of appointments and ER visits, doctors told me I was ‘just anxious.’ I spent my final year of college nearly bedbound, fully walker-bound. All the activities I built my life around — marching band, the gym, work, parties — fell suddenly away. With that one question, she saved my life.”

‘I’m allergic to WATER. People call me a ‘faker.’ I should’ve seen this coming. But I’m so GRATEFUL.’: Woman with EDS, POTS, and aquagenic urticaria says ‘I want to raise awareness’

“I remember being in a lot of pain and visiting the first aid room at school and being sent away, as it was most likely ‘growing pains.’ I have to accept I can’t get a role as physical as I’d like, but this is part of having a disability, learning what you can and can’t do.”

‘The doctor said, ‘Something is brewing, but I just can’t put my finger on it.’ I went from a ‘migraine’ to blacking out for two months.’: Teen battling chronic illness urges ‘let the worst inspire the good’

“I spiked a 108-degree fever. I was stripped naked, covered with cold cloths, and had fans blasting my body. Soon after, I went psychotic. Nothing I said made sense, and everything had a twisted meaning. HGTV sent me into full-blown panic.”

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