scoliosis

‘There’s something wrong with her!’ My mom looked at my triangular-shaped face.’: Woman with rare form of Dwarfism defies ‘grim’ life expectancy, ‘never gave up’

“My mom was pregnant with twins when doctors quickly realized I was growing a lot slower and smaller. Being a nurse, she knew diagnosis was grim. My dad got a call from my mom saying her water broke and he needed to get back to the hospital as fast as he could. Baby A, which was me, was ready to come out and see the world! Everyone else was not.”

‘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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