Broken limbs, dislocated hips and joint pain: Woman on battling rare, inherited condition

edsKatie, 34, lives in Essex. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her regular injuries, even in her sleep. She says:

“By the time I reached my seventh birthday, I had already broken my arm three times. I seemed to be forever falling over and hurting myself and I was always covered in bruises. Everyone just assumed I was clumsy. But, just like my mother and sister, I was hypermobile – or double-jointed as we called it back then – and I used to show off by doing the splits or bending my hand behind my elbow. Being flexible felt like a gift and it was my dream to be a dancer one day.

Then at senior school I began to feel a lot of pain in my joints, especially in my hips and shoulder blades. I had to take paracetamol two or three times a day to deal with the discomfort and I began to get regular injuries. When I was 14 I dislocated my right hip just walking down the garden path. Another time I dislocated my left ankle on the trampoline at school and had to be rushed to hospital.

By the time I reached 16 I had dislocated my hips about 50 times, but my GP thought all the problems were caused by my dance classes.

“You need to stop,” he told me. “Otherwise you’ll be in a wheelchair before you’re 40.”

My parents got me referred to a physiotherapist for a second opinion. She said I could still dance but my hips were so fragile that I should no longer walk up or downstairs. I had to have all my lessons on the ground floor at school, and at night my dad had to carry me up to my bedroom. I knew there was something seriously wrong with me, but I was worried that people would think I was a hypochondriac so I just soldiered on, all the way through school and university too.

Read More: Express

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