‘I fracture my arm just brushing my hair’

Walking through the school gates I winced as a gang of boys came running towards me.

“Let’s make the cripple fall down,” one of them yelled. I cowered as they surrounded me, but I didn’t want them to know I was scared.

“Leave me alone,” I pleaded. Thud! Before I knew it one of the boys had punched me hard in the stomach.

Silently, I fell to the ground in agony. The boys ran off, laughing, and I began to cry hot, angry tears. No one came to help me to my feet. I lay there until the pain subsided and then picked myself up and went into class. I didn’t tell anyone what had happened. There was no point.

Now, I stumbled to the classroom, but I didn’t even make it to my desk before the pain in my stomach became too much. I was taken to hospital where I had to stay for two weeks. I had a broken leg and my appendix had to be removed as it was so swollen. The truth about the bullying came tumbling out. The boys all left school before the head teacher could do anything.

‘I’d lock myself in my room and cry’

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.

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.

“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.”

“Really?” I asked, relieved that finally somebody could help me. I started attending monthly check-ups with a rheumatologist to help manage my condition. I also had physiotherapy, hydrotherapy and took painkillers.

‘I can dislocate my shoulder in my sleep’

I’m now 22 and I’ve learnt how to limit breakages by moving carefully, but I still dislocate a joint about five times a week. I can be walking down the road, turning a tap, opening a jar or reaching for my coat and I dislocate my fingers, wrists, ankles or toes. Also in my sleep, I can turn over and suddenly my shoulder has dislocated. I’ve even learnt how to pop them back in myself.

To help me deal with my illness I had counselling and pain-management courses, which were useful, and I got a job in a chemist. Living with chronic pain can be exhausting and I’m prone to picking up infections, which can mean taking rounds of antibiotics. It meant time off work and eventually I found the job too much.

I now work as an office assistant, which is much less demanding, and have an understanding boss. I really love my job. It helps me feel normal. Two years ago I also met my fiancé Jake Allen, 22. We’re not in a rush to get married, but we want to have a family when we do. We know it will be hard for me and I may have to spend the last few months of pregnancy in a wheelchair but Jake is so supportive I know he’ll always be there.

Who gets it? “EDS is a rare condition worldwide and in the UAE. In my clinical practice I encounter about two to three cases per year,” says Dr Sonia Wilson, specialist dermatologist, RAK Hospital, Ras Al Khaimah. Statistically around one in every 2,500 people is diagnosed with EDS, both men and women of all ethnic backgrounds. It is genetic and caused by alterations in certain genes, which can be passed from parents to their children.

Treatment: There is no medication to cure EDS. Physiotherapy, hydrotherapy, muscle relaxants and in some cases surgery can help. Most people can hope to live a normal life.



See www.ednf.org for more information.