Ehlers-Danlos Syndrome

‘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.”

‘My left shoulder dislocated talking to my mom. She was mortified. ‘AHAA!,’ he said.’: Young woman recalls ‘party tricks’ as joints dislocate after Ehlers-Danlos Syndrome diagnosis

“I woke up with a sore knee. We ignored it… until the pain became unbearable and was spreading. It all happened so fast. I was too overwhelmed to be scared. However, I was confused. We all were. The tricks I used to gross my friends out ended up being a piece of the puzzle. Hyper mobility, one of the most obvious symptoms of EDS.”

‘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 in my slippers with my 3-year-old, I packed the car for my life. I knew he wasn’t far behind.’: Mom of 2 escapes abusive husband, urges ‘get out when it’s safe’

“He threatened, ‘If you ever leave, I will hunt you down and destroy you.’ Our daughter ran to me and hugged me. Before I knew it, something came over me. He’d taken a taxi and left the car and house keys. It was time. I took my son’s Christmas money, packed the basics, all the while double checking the door. I knew if he caught me, he would kill me. I had no other choice but to leave, and I had no idea how to do it.”

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