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Monday, October 26, 2009

Blinded By The Light

So, I woke up around 4 this morning and have been in one of those introspective, thinking mood...Ahh, it never stops. lol. But I wanted to share something because it's just an issue I haven't discussed much. Actually, I don't give it a great deal of thought - unless I forget my sunglasses on a bright day.But, I just felt like it for some reason.

For those of you who don't know, over the Summer, I was diagnosed with a rare, genetic eye disease called Choroideremia. It's gender linked and is generally a male-only disease. Females are carriers of the gene, but only if they're first-born. The first-born son of a carrier or someone who has it will have the disease, first-born daughter will only carry. If a female carrier gives birth to a girl first, it breaks the chain in the family and that's the end of it. My dad has the disease and it's lead to lack of his peripheral vision (permanent tunnel vision, basically) and he's night blind. Once it gets dark, he can't see. Extreme light sensitivity is also a sympton. That's the only eye issue I've ever had is a very severe and somewhat painful sensitivity to bright lights.
I'd never had my eyes checked before, so I finally went to the eye doctor over the Summer. In over 40 years, the doctor had only ever seen two cases of Choroideremia, my dad being one. He checked my eyes and I went out to wait for the drops to wear off. As I did this, he called my mom back to talk to her. After a few minutes, he called me in. He sat me down and gave me the rundown of what was up with my eyes. But, I thought he was just telling me I carried it, which I figured. I didn't get it at the time. We got in the car and my mom turned around and said "You know what he was trying to tell you, right?" and I said "Yeah, that I'm a carrier." and she said "No, you have it." Which lead my little brother to nearly wreck his car. We were dumbfounded. There should be no possible way that I should have this disease, but, it happened. I started crying because I was afraid. Having seen what my dad has suffered with all these years, I had good reason. I needed more testing and photos done, but he was pretty certain.


If any of you have seen the odd looking orange photos of my eyes, the dark spots are an indication of the disease. I already have a thickening, but my vision is perfect. The pictures told him for certain that I had this disease. He said they looked just like my dad's. My mom and dad's mom were there with me and both started crying. Grandma was just devestated because she seems to feel guilty in all this. Of course, that isn't the case. The doctor hated having to tell the news. I cried for a second and then said "Well, y'all know I can't do anything halfway." Hahaha, Grandma smacked my leg for making jokes. That's my coping mechanism. It wasn't all bad that day, I got chocolate :) lol.

I'm blessed to have good vision but am preparing because it may not always be the case. But I'm hopeful. Ha, like I said, this is further proof I can't do anything half-assed. Go big or go home, I guess. I choose to take the diagnosis with hope and humor. Hell, what can I do about it? Not a thing. There's no cure right now and very little is known about it. But the way medicine is advancing these days, I'm not going to worry over it. It's all the more reason to see the beautiful things in life. We must learn to accept the things we cannot change. I'm thankful to be ahead of the curve on this. I've come to feel that, although it's hard to swallow, it's not worth crying over. Tears are only going to blind me and I won't let them or this disease take my sight from me.