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My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver.
In the 23 years that have followed it’s been rare for us to have overlapping symptoms, save our loose joints, velvety skin, and propensity for looking 20 years our junior. For every one of her heart issues I had a uterine one, for every one of my mysterious leg bruises she would have a torn open scratch in her arm.
Through all of the tests and treatments, we had each other… until suddenly we didn’t. The mitral valve prolapse and collapsing pulmonary artery that had been treated for 14 years took my mother at the age of 62, and it hurt more than the total combined dislocations I’ve ever experienced.
Living with hEDS, the most important thing to have, more than a caring doctor, quality braces, a positive outlook, is someone who understands what it’s like, every unstable step of the way.Tags: Coping, Diagnosis Journey, Ehlers-Danlos syndrome, hEDS, Support System
Categorized in: Stories