When I was sixteen at the start of my A levels I became ill, I never recovered and I never will. I have an inherited connective tissue disorder, Ehlers-Danlos Syndrome, caused by a defect in the synthesis of collagen. This collagen helps the connective tissues to resist deformations. The condition can manifest in many ways, but for me it’s highly lax ligaments and tendons, resulting in frequent dislocations, chronic migraines, joint pain and much more. It is a profoundly under diagnosed disease, one that I had never heard of, and one our GP had never considered, despite having had the symptoms for as long as I can remember.

Many people have flexible joints. They’re the same people who did ballet or dance when they were young and can still touch their toes. In primary school, while most children played ‘tag’ or ‘Cops and Robbers’, I would put on a show-where I was Harry Houdini, the playground my stage, and the school my breathless audience. One moment I’d be tied up with a plastic skipping rope and the next, still knotted, it would be lying beside me on the floor and everyone’s jaws would have dropped.

“How did you do that?” They’d ask.

“Teach me!” They’d beg.

But how can a six year old explain that their joints simply drop out of place? Then, with considerable effort, they’d have to put them back in again.

EDS is considered a rare disease, most likely due to doctors themselves not knowing about it, however every year the percentage of those afflicted rises dramatically. The devastating truth is that it is one of the simplest diseases to diagnose- all that is needed is a protractor, access to criteria known as the Beighton Scale and a doctor for confirmation.

Growing up I always knew that I was different. My ankles would twist every time I tried to run, sometimes I wouldn’t be able to breathe despite no physical exertion and after a long day my knees would hurt so much I wouldn’t be able to walk. But, I was always stubborn, and the idea that I wasn’t the same as everyone else was mortifying- so I learnt to hide it, ignore the symptoms, and pretend to be normal.

I had always struggled to concentrate in school, one way the body copes with the fatigue and stress upon the joints is to flood itself with adrenaline, sitting still becomes near impossible. But when I decided to stop playing as many sports so that I had more time to focus on my A levels, the vital muscles deteriorated and my grades plummeted.

Teachers decided that I was lazy, that was the obvious conclusion for a normal child, that I would excel again if I simply put more effort into my studies- after all, how could I express in words that the act of sitting up in class left me so drained all I could do was slump over the desk and wait for the bell to ring? How could I explain that I could never finish test papers because my hands cramped too severely to write? Concentration is laughable. Chronic fatigue followed the migraines, the extra adrenaline produced led to anxiety, the stress of trying to keep up with everyone else to depression. After all, when someone appears to be healthy on the outside, no one ever considers the invisible disease that wrecks the inside.

I found myself many an evening hiding away in my room, biting my tongue in feeble attempt to stop myself from crying as I searched in vain for what could be wrong with my body, with me. The diagnosis, earlier this month, came with an indescribable relief. I no longer felt so alone anymore.

There is no cure for my condition. This I have come to accept this and done the best I can with this knowledge. It’s all I can to keep a smile on my face but it’s been very hard. It’s easy to feel like you are utterly alone in life- as though you are drowning in a vast, deep ocean whilst everyone else is somehow managing to swim. It is an overwhelming, terrifying feeling.

There needs to be more research into this condition and training given to medical practitioners in order for more Ehlers-Danlos sufferers to receive adequate treatment so that they do not have to struggle so much throughout day to day life, because although this condition is not curable, it need not be a life sentence.

 

By Savannah Howard, Nonsuch High School for Girls