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‘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.”

‘Your baby is breathing 100 times per minute and still not getting oxygen.’ I felt so angry. I wanted answers.’: Mom ‘crushed’ by Childhood Alzheimer’s diagnosis, ‘we spoil her every day’

“I was at work, six months pregnant, when I saw the doctor’s office was calling. I naively answered. I shouldn’t have. ‘The older she gets, the more her body and mind will fade away.’ I didn’t want to call my husband. I wanted to crawl in bed and never come out. We spend each day wondering, ‘Will today be her last? Will she recognize me tomorrow?’ Our sweet, perfect, little girl was dying.”

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