My wife has recently been diagnosed with CREST/scleroderma. Can anything be said about the overall life expectancy of people with this diagnosis?
Older textbooks on the subject often painted a bleak picture, but I think there is general agreement that overall, scleroderma patients are doing much better. Kidney disease which use to be a large cause of mortality has been almost eliminated with the use ACE inhibitor medications, enalapril and lisinopril. Interestingly, the skin disease actually improves spontaneously after many years. The disease has so much variability from person to person that I think it is not useful to talk about life expectancy. Clearly, we still need better therapies, but many patients with milder forms of the disease have excellent outcomes.