I was in the airport with my birth mom, at a Starbucks to be exact, when a lady came up to us and asked if we'd ever heard of Ehlers Danlos Syndrome. I guess the way my thumb bent backward when I picked up my coffee cup made her think I had this odd-sounding disorder. I didn't think much of it until later, when my step-mom told me she'd done some research and we went to see a geneticist.
Peter Byers, a geneticist at UWMC diagnosed me with Ehlers Danlos Syndrome Type III (Hypermobility Type) when I was fourteen years old.
Ehlers Danlos Syndrome is a genetic disorder that affects the collagen, or connective tissue in the body. It is degenerative, meaning that it gets worse with age, and super rare, to the point that it often gets misdiagnosed as different, more common disorders.
There is no cure for this disorder, and there is a 50% chance that if I have children I will pass this disorder onto them. This disorder is degenerative, meaning it will get worse over time, and my doctors say that I will probably be in a wheelchair by the time I am thirty.
Even though this disorder is incredibly rare, I know that I'm not alone. There's even a whole foundation for it called the Ehlers Danlos National Foundation (www.ednf.org). It's just hard when people think I'm normal because this illness is often considered "invisible", but I'm getting used to it.
I have Ehlers Danlos, It is not contagious, and it is not dangerous (to you at least), and it doesn't make me any less of a great person. I am slowly learning to believe that last part, and to work through the difficulties this illness presents me with.
Nowadays the dislocations have spread to almost every major joint in my body, including my shoulders, wrists, elbows, fingers, hips, and ribs. Did you know that your ribs can actually dislocate? I didn't either until it happened to me. It turns out the stuff that holds each individual rib to your backbone and breastbone is made up of collagen, the stuff that's affected by Ehlers Danlos Syndrome. It's not fun to have a rib dislocate, but then, it's not fun to have anything dislocate. In the next few years I anticipate that every single joint in my body will dislocate and become loose, but that is just something I have to live with. No use crying over dislocated joints (unless it's a particularly painful one).
I have Ehlers Danlos, It is not contagious, and it is not dangerous (to you at least), and it doesn't make me any less of a great person. I am slowly learning to believe that last part, and to work through the difficulties this illness presents me with.
Nowadays the dislocations have spread to almost every major joint in my body, including my shoulders, wrists, elbows, fingers, hips, and ribs. Did you know that your ribs can actually dislocate? I didn't either until it happened to me. It turns out the stuff that holds each individual rib to your backbone and breastbone is made up of collagen, the stuff that's affected by Ehlers Danlos Syndrome. It's not fun to have a rib dislocate, but then, it's not fun to have anything dislocate. In the next few years I anticipate that every single joint in my body will dislocate and become loose, but that is just something I have to live with. No use crying over dislocated joints (unless it's a particularly painful one).
