By Lisa, Ehlers-Danlos syndrome, hypermobile type, United States, June 7, 2020

New Wheelchair User

I wasn't diagnosed with EDS until age 55. I spent my whole life with dislocations, subluxations and chronic pain which I was told was all in my head. I could put my foot over my head with ease, I also enjoyed sitting on the floor with legs in the "W" position. I was called 'double-jointed'. With the exception of being the star of my softball team, I was a klutz. I barely slept because of anxiety. 

I now use either a walker with braces or a wheelchair. I suffer with intractable pain. BUT I have met some wonderful friends along my journey and I'm a survivor.


*Find others with EDS on RareConnect, the online platform for people affected by rare diseases

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