Support #myEDSchallenge and help me reach my goal!

Zebras are all around us. No, not actual zebras, though that would be cool. I’m talking about a different kind of zebra. Medical zebras. People like me.

People get confused about this part. I look no different from anyone else really. I’ve got 4 limbs, skin, nails, eyes, everything that the body is designed to have. Or so it appears. I’m missing one very important part of the human body - collagen.

Collagen is our main connective tissue, the body’s own special superglue. It’s the most abundant protein in the body, and is found everywhere. It holds our joints in place, our skin and nails together, our ligaments and tendons to bones. It’s literally holding our lives together. Well, it’s supposed to, anyway. My name is Clary Taylor, and I have Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome is a rare connective-tissue disorder that impacts collagen. Obviously I still have some, or I’d be a crumpled mess on the floor. However, in my body, collagen is loose and damaged. Think of a rubber band and a piece of gum. You can stretch that rubber band all you want, but unless crazy force is applied, it’ll hold it’s shape and go back to its original size. This rubberband is how normal collagen is. Now, imagine applying the same force to a piece of gum. It would stretch for a long time, and eventually snap, right? That’s how my collagen is. That’s what’s holding me together.

While this all does sounds a little dramatic, it’s very true. This is the reality for me and thousands of others with Ehlers Danlos Syndrome. Though there are 13 subtypes, this condition is chronically under-diagnosed and misunderstood. In fact, I've had to explain it to a variety of doctors who are supposed to help me.

May is Ehlers Danlos Syndrome awareness month. Your donation will help fund research and awareness projects for the syndromes. Specifically, it will help the HEDGE project, the search for the genetic cause of Hypermobile EDS (my type).

Thank you in advance, and stay flexy everyone!