I honestly have never met another person in my lifetime that has also had Duane's Retraction Syndrome. I've even lived all over the country, even out of the country and still never met a single one. It's one of those rare disorders that makes you feel like the only freak on the planet.
I figured I would talk a little about it in hopes of directing others to the support they need because living with Duane's can be tough especially for children.
You may be asking, "What on Earth is Duane's Sydrome?" Here is a brief run down of it
"DS is a miswiring of the eye muscles that causes some eye muscles to contract when they should not and other eye muscles not to contract when they should. People with DS have a limited and sometimes absent ability to move their eye outward toward the ear (ie, abduction), and in most cases, they have a limited ability to move the eye inward toward the nose (ie, adduction).Often, when the eye moves toward the nose, the eyeball also pulls into the socket (ie, retraction), and the eye opening narrows. In some cases, the eye moves upward or downward. Many patients with DS develop a habit of turning their face to maintain binocular vision and thus compensate for improper turning of the eyes. In about 80% of all cases of DS, only 1 eye is affected, most often the left eye. However, in some cases, both eyes are affected; usually, 1 eye is affected more than the other."
Having read that, you gather it is an eye thing, and it's not pretty. As a child I was teased for it ALL the time. Being called "cross eyed" and "crazy eyes" makes you want to hide under a rock in elementary school. It's that age that you get teased for everything under the sun and want to blend in as much as possible. It's a little tough to do with the main focus of your face going wonky when you look to the side. I learned to hide it as best as I could, but it's not easy. I would close my eyes as I turned my head, and I would avoid having to look to the sides with just my eyes, at all costs. It worked to some degree. Now that I'm older I really don't mind as much, but back then I felt like a side show.
The only thing that bothers me these days is photos of myself that show it. I've learned lots of posing tricks over the years to hide it, but of course it still happens. I don't like looking at it, so I'm sure other people are freaked out by it. It's one of those things that really only becomes a problem when I get nervous or embarrassed, so I don't worry about it too much. Most often I don't even think about it. The last time I was really reminded about it was when I went to get my driver's license renewed. I never realized I had developed the oh so common, compensatory, head turn until then. I was getting my picture taken, and the lady had to ask my numerous times to look straight ahead, well I "thought" I was. I guess this can actually lead to neck and back problems, which I already have. This has lead to me almost want to think about considering surgery. I would need to do A LOT of research about it though. I've briefly glanced over an article or two about it, but that's about it.
Hmm... I think I'll cut this post short. Duty calls...... the pack is hungry, so this mama wolf needs to dash. I'll revisit this soon though.
No comments:
Post a Comment