OK, now I'm officially WTF. So, as it turns out, I have this rare syndrome.
→[More:]I was born with it, and I'm 33 so I'm pretty used to the "symptoms," but I never anticipated they could get worse. I also didn't think I had to be particularly careful about my physical activity. Now that I have a name for the syndrome, I'm scaring myself half to death through Google. People don't die from this but they sure as hell suffer. It's a little unnerving to see into your possible future. The weird thing is that I'm less concerned for myself than for my (soon-to-be) husband, because if something happens, he's going to be the one who has to take care of me.
I know this post seems like "feel sorry for me" but it's not, at all. I just need somewhere to express my own fear without scaring the hell out of my family and friends. I'm known as the tough, resilient one and it scares them half to death when I'm scared.