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The Part of My hEDS That’s Really Hard to Talk About

themighty.com

I have a condition called hypermobile Ehlers-Danlos syndrome, or hEDS for short. It’s a hereditary connective tissue disorder which basically means that the collagen in my body is faulty.

Collagen acts as a bit like glue in the body, holding all the organs and joints and bits in between together. So as you can imagine when the glue in my body is faulty, everything falls apart, quite literally.

My joints regularly sublux (partially dislocate) or dislocate which is painful but I’ve learned to self-manage, and going to A&E (aka the ER) the vast majority of the time isn’t necessary, as painful as my dislocations can be.

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