May::Tuberous Sclerosis Month.

I bought one of these bracelets this weekend.

And one of these car magnets...

It says, "Cure Tuberous Sclerosis."

May is National Tuberous Sclerosis month, and I'm really excited for it. You see, I live with TSC; I was diagnosed with this rare genetic disorder when I was 15. Neither of my parents have it. Rather, one of my genes mutated...or something.

The fact that I have a genetic disorder has never really phased me. I liked having something to share during those times we were forced to go around the circle and "share something interesting about yourself." It makes me different. The white spots (or cafe' au lait spots) on my left leg and right arm don't bother me--I call them my inside-out freckles. The angio fibromas on my face aren't really that noticeable, and makeup takes care of them. The orange peel structure on my wrist is actually kind of cool, the tubers on my brain, at worst, give me headaches, but I can live with them. I have an MRI once a year on my brain and I have a kidney ultrasound bi-yearly. I have my own radiologist. Some day I'll have to go to genetic counseling to determine whether I want to have my own children (they have a 50% chance of being born with TSC). And even though I found another skin disorder (which starts developing at age 20 and is the most disgusting of the skin disorders) on my toe two days ago, and will probably have to have surgery on it this summer, things could still be so much worse.

I'm just blessed because I don't have any of the really terrible symptoms of tuberous sclerosis. I don't have seizures or mental problems or learning difficulties. My doctor told me that I'm his only patient with tuberous sclerosis who has made it to my age and is able to attend, and get good grades in, college.

I'm sad because there are so many affected by TSC, and they are mostly young kids. TSC affects 1 in 6,000 children and is the leading cause of epilepsy and autism. And yet, it's so exciting because there are a lot of different things that are happening to raise money for finding a cure. Two really big ones are Step Forward for a Cure (go here to learn more) and Comedy for a Cure (go here to learn more).

So now if you see me wearing that bracelet, or proudly displaying that bumper sticker on my car, you'll know why. I'm trying to do my part.