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‘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.”

‘Her eyes were huge, her skull was misshapen. Even though we had prepared ourselves as best as we could, it was still a shock to see Emmy in the flesh.’: Mom gives birth to baby with Pfeiffer Syndrome

“My honest thought when I first saw her was, ‘It wasn’t supposed to be this bad.’ Our doctor didn’t say anything. The nurses were silent. Emmy was silent. It was eerie and terrifying. We know she will always look different and will face bullies in her lifetime, but our goal is to always show her how loved she truly is.”

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