Ehler Danlos Syndrome Awareness

Raising awareness is incredibly important for me. I have encountered doctor after doctor who has either never heard of Ehlers Danlos syndrome, or whose entire knowledge of it is that it’s a connective tissue disorder.

I’d always known I was hyperflexible, but that had never been identified as a problem. Until my sister (Ceinwen Hall) displayed these paintings, and her friend announced her husband had the same condition. Although it still took a few years from that point to me being assessed and diagnosed, I likely saved myself a decade or so of developing problems with no answers.

In the EDS support groups I’m in, most people spend about a decade struggling, being dismissed as hypochondriacs, and denied treatment. If more doctors knew about EDS, a lot of people could get answers much earlier.

Image description: A painting on a red background of young adult peeking out from behind black hair. Their arms are twisted, one over their head, reaching over to hold the other arm which is bent and angled backwards.

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