The following comments are not meant to diminish the pain and suffering that are reflected in this post, or in any way to denigrate the treatment standards of care that have been developed over the years. Without these treatments, many would suffer even more than they have. These comments are only meant to provide some hope for those who are afflicted with this awful disease.
My Mother was diagnosed with scleroderma in the early 1990's. She will be 99 in August 2018. At the time, she was told to join a support group and get her affairs in order. We asked why. The reply was that everyone who took the prescribed drugs experienced serious health issues and didn't live long. She refused to join a support group. As she put it: " I don't want to sit around with a bunch of people talking about "my scleroderma". Instead I want to experience whatever time I have left." She refused the prescribed "standard of care" and continued to teach elementary school until she was in her 89th year, backpacked with my Dad, ran the family household, played volleyball on Tuesday and Saturday evenings with the 30 to 50 year old mens' volleyball teams, and so forth. This year, she has started to have some of the symptoms that were predicted about 25 years ago. She still takes no medications, except certain supplements, pre- and probiotics, and so forth. Her current physician says she probably has another 5 years in her. By the way, due to the tightening effects of scleroderma, she looks as though she might have had a face lift (which she has not). I realize that Mom's version of scleroderma may be different from many others.
One more aspect, Mom and Dad were the sole hands on designing and building their own home in the 1940's, maintaining the vehicles, rototillers, mowers, digging a well, growing and preserving our own fruits and vegetables, fowl, rabbits, and more. Dad had been First Mate on ships in WWII which meant he was involved with all sorts of toxins in maintaining the ships. While building and maintaining their home, both had their hands in kerosene and other petroleum products, installing fibreglas insulation, roofing, painting the house, yard work (back then pesticides were in use although they used much lower amounts than were recommended, and after a few years, stopped using any). Dad was diagnosed with chronic lymphocytic leukemia also in his 70's. He took control, both changed their eating and exercise habits, and Dad also long outlived the diagnosis of 6 months to survive. He refused the standard of care chemo, etc. He was active and lived to 88, working in the yard, fishing, and enjoying family and friends. At his death, his "numbers" were the same as they had been at the initial diagnosis. So, it has been postulated that their scleroderma and leukemia may have arisen out of compromised immune systems from the poisons both were exposed to.
My siblings and I would like to know what symptoms to expect as Mom's scleroderma increases its toll on her and how we can help her to remain comfortable.