‘I’d lock myself in my room and cry’
I was used to the broken bones and the hospital staff knew me well. From the age of five I’d had more than 20 breaks. I’d trip over my feet, fall off a curb or catch my leg on a table and be back in hospital getting another cast for yet another broken bone. Even brushing my hair could cause a fracture in my arm. I was also double-jointed in every joint in my body, which left me in constant pain.
My legs eventually began to bend inwards, which meant I had to learn to walk again. The GP and my local hospital, The Princess Alexandra in Harlow, did tests but couldn’t find out what was causing my pain and illness. Some doctors even accused me of attention seeking and said I couldn’t be in as much pain as I was. It was like having an invisible illness. I’d try to put on a brave face and get on with my schoolwork but every day I’d go home, lock myself in my room and cry.
Around my teens other problems reared their head too. I started having trouble going to the toilet and sometimes struggled to empty my bowels and bladder.
Then one day I felt really strange. Sitting in the living room getting my hair cut, I suddenly felt sick and dizzy. “Sorry, I need to have a lie down,” I said to the mobile hairdresser. “Are you OK?” she asked. “Erm… I think so,” I muttered, stumbling into the next room. Suddenly it all went black. A few seconds later I woke up on the floor. “I think you’ve fainted,” my mum said, gently helping me on to the sofa.
It was the start of regular fainting episodes. I’d pass out at school, at home or even at the hospital. I dreaded it happening because when I came round and looked up at strangers’ faces all gathered around me I’d be so embarrassed. What was wrong with me? One minute I’d be normal then the next I’d be bedridden with joint pain or blacking out. Still nothing showed up on tests.
By the time I was 18 I was depressed. My ill health was ruining friendships and relationships. People couldn’t understand how one day I’d be enjoying myself with them and the next week I’d cancel plans and be bedridden or in a wheelchair with a joint problem. Some people thought I was putting it on. Unable to cope, I went off the rails.
“Where are you going?” Mum would ask as I tried to slip out the door at night. “Just out partying with friends,” I’d say. “Jade, I worry about you,” Mum said. “You’ve been out a lot and each night it’s ended in A&E in hospital with a broken bone.”
“I’ll be OK,” I said, slamming the door. But within hours I’d be calling her. “Mum, I’m sorry but I’m in the hospital. Can you come and get me? I’ve broken something again.” She’d sigh but she’d always come and get me.
I was so desperate to fit in I was risking my health and stressing my family. I started to have counselling to deal with my problems and that gave me the motivation to seek help again. My GP referred me to a new specialist at Addenbrookes Hospital in Cambridge. In his examination he saw how hyper-mobile my bones were and how stretchy my skin was, and within 10 minutes he diagnosed me. “You have Ehlers-Danlos Syndrome,” he explained. I had never heard of it, but he told me it was a connective tissue disorder caused by a problem with the