Ehlers-Danlos Syndrome

‘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.”

For our best love stories, subscribe to our free email newsletter: