The story of Lorna
Imagine a brick building built with mortar that never dries. Walls move, buckle, and eventually collapse. Now imagine a complex human body with a similar problem: collagen which is made faulty by a genetic mutation. Joints dislocate repeatedly, skin and blood vessels are fragile enough that sutures don’t hold, and the slightest bump leaves a bruise. Gums cannot hold onto teeth, and retinas shear away from their anchor points. Arthritis, especially in weight-bearing joints can start in childhood. The older you get, the worse are the problems.
This is Ehlers-Danlos Syndrome. I have the hypermobility form, and like my contortionist grandfather, I have extra supple joints and when young could amaze my friends. But then by age 19, I already had osteoarthritis symptoms in my knees and shoulders.
But I didn’t get a diagnosis until my forties, when the few medical professionals who had actually heard of EDS started to connect the dots of my many issues. Before that I was clumsy, inattentive, complained too much, and of course neurotic.
I will be 68 in 2018, and must use a wheelchair to get around. I cannot support myself with my arms because they and my collarbones dislocate. The vast majority of medical professionals have never heard of EDS, so I carry a descriptive card in my wallet, with info that could save my life.
I am EDS. I don’t have it as bad as many others. But I keep on keeping on. It’s what I do; how I roll.
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