I just wanted to say that it must be really hard for you to deal with this. I can completely understand. I was diagnosed with morphea when I was thirteen and it turned into linear scleroderma just months later. I've had to go through many many experimental treatments and it's been really hard. I was almost 15 and was in remission after many months traveling 3-4 hours back and forth to The Cleveland Clinic.
I'm 18 now, and at the beginning of this year I came out of remission and had to start treatment again. Now they think that I might have lupus...which is much worse, but they have me on a medication for that also to make sure that nothing more comes of what has started.

So I commend you for what you are doing, there really isn't a lot of research done about this disease, and they dont know the cure making it very hard to handle. People need to know more about this, it's not something that can be written off as nothing, it affects the person involved...their friends and family.
If I had known about it sooner I would have been doing this a long time ago...so thank you for being the first to step up!
I pray that everything works out for you.
Please keep in touch. ( you can find me on facebook and myspace if you need to)