EDS

‘What’s that? It could be something sinister. You might have a tumor.’ I got fired for being ill.’: Young woman diagnosed with Ehlers Danlos Syndrome after countless tests, ‘I was getting sicker and sicker, but with no answers’

“I was sobbing in bed one night angry at God. ‘Why won’t you take the pain away?!’ I had worked so hard despite being unwell, pushing myself to achieve. I got the grades to study music, my true passion, but was too unwell to go! I was gutted. The emergency doctor uttered the word ‘stroke.’ I was in disbelief. I was only 19 years old.”

‘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.’

‘I was told, ‘We didn’t want your head to pop off.’ There was a serious problem.’: Woman diagnosed with Ehlers-Danlos Syndrome after 10 years of being doubted by doctors because ‘it can be very difficult be taken seriously as a teenage girl’

“I felt my skull slide into my throat. I immediately started gagging and pushed my chair on its hind legs. It can be very difficult to be a teenage girl and be taken seriously. This wasn’t the first or last time I’d be doubted about my symptoms. Being doubted really plays with your head. I was never a dramatic attention seeking individual.”

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