May is Ehlers-Danlos Syndrome Awareness Month. As someone with this rare genetic disease, I want to do my part so more people are aware of it. I hope someone will see these photos and say, "Hey, I can do that" and won't wait decades, getting sicker and sicker, before they are diagnosed.
 |
| This is one of many EDS "party tricks." If you cover my pants with your hand, my head looks like it's on backward. |
 |
| Cute EDS Awareness t-shirt. |
 |
| This is the EDS "gang sign. Take your thumb and touch your forearm |
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!
