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I was diagnosed with EDS at four years old after being admitted to the hospital with my ‘healthy as an ox’ brother with suspected child abuse. 2 weeks later I was discharged with a diagnosis of classical Ehlers-Danlos syndrome (cEDS), and next to no information. My mother (no history or diagnosis) then studied to become a nurse for a better medical understanding and to learn wound care.
EDS affects my life mostly through bruising and lacerations, which hold me back from activities and stop me in my tracks during the trauma. I always scar and get a lot of discoloration on my legs esp around scars. Opening a car door sliding across my leg can tear my skin (full thickness) and not pull a thread in my leggings. I have rolled over in bed and managed to knee the wall tearing my skin. Fortunately, I married a nurse who will patch me up whilst I’m still half asleep.
My joints are hypermobile but I am fortunate that I have very few subluxations. I have flat feet and use orthopedic insoles, and have issues with bunions which cause awful pain walking up hills walking fast and pushing prams, etc.
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