Quiltfairy, your brother is also welcome to swap with me, today I got up at 7:30 but not a.m. actually p.m. and no, I was not just resting my eyes...I wish!
We tend to think a disease only serious if we can either see how it debilitates or we have been give a short time limit to live by. Well a life limiting (terminal) disease is not just cancer or something that kills us off within months or two years at most. When I saw the scleroderma expert for the first time I asked what my life expectancy was, I had no internal organ involvement but rapid, massive skin involvement, he gave me at least 10 years. I was 39 years old and should have expected to have at least 30 years at that point not just 10. I call that a life limiting illness. I call that a serious, life changing illness. I call that an illness your brother would not want in a hurry.
Funny, you think people would be glad to see us not as ill as we could be, better than expected, still able to have quality of life. I may well buck the trend and exceed 10 years but I don't think whatever it is will be what it would have been pre scleroderma. No one in their right mind would want that.