Wednesday, February 16, 2022

HEDGE Study, Ehlers-Danlos Syndrome

Early this morning, I had my blood drawn. And aside from the fact that I’m a difficult stick because my veins collapse, this shouldn’t be something to write a blog post over. But this is a big deal.

 I was invited by the Ehlers-Danlos Society to participate in the HEDGE study. Its goal is to find the genetic markers for the type of Ehlers-Danlos Syndrome I have. They will do a whole-genome sequencing study of 1,000 people from 86 different countries who have hEDS.

I’m very thankful to everyone who has donated time, money, and blood to run this study. (It’s hard to find research money for rare diseases.) My hope is this study will make diagnosis quicker and easier and raise awareness in the medical community, so that no one else will have to wait 50+ years for a diagnosis. Go, zebras!


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