Ehlers-Danlos Syndrome

‘I was struggling so bad mentally my doctor wanted to admit me to a mental health facility. But at one of my routine lab draws, we found out I was pregnant. I was absolutely terrified. I was in no place to have a baby.’

“Watching him leave was one of the most difficult times in my life. He got on the bus and headed off and I bawled my eyes out as I watched the bus drive off. I missed school the next couple days because I was so upset about watching him leave, knowing I wouldn’t have any contact with him.”

‘Shaking, with my daughter, I drove to the gas station. I needed help. I stood there in my slippers, crying with my 3-year-old in the back, convinced he wouldn’t be far behind.’

“He would remind me this was my second marriage and I had two children by two different dads. He told me no one else would want me. Starting over on my own, with a disability, would be impossible. Before I knew it, something came over me. To this day, I don’t know how I managed to do this. I packed for my life.”

‘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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