Dude...
That sucks.
My sister has a whole bunch of the cafe au lait spots and we've always wondered if that's what she has. So far so good for her though.
I have my own incurable thing... I've posted about it some, and it's actually what led me here in the first place.
The way I look at it is this - there are no guarantees at all. I could step off the curb and get hit by a bus tomorrow. "now" is all you can count on. I try my best to fully inhabit "now".
The future is fuck scary. The past, it's gone. I want every moment I have to be as happy and good as possible, so I focus on the good, attend to the things that make me happy, and try to let all the rest of it go.