I've been a volunteer for the annual Nassau County Museum of Art walk-a-thon for the Scleroderma Research Foundation for a few years. I joined because a friend's mother, someone who has been like a mom to me, developed scleroderma and this organization donates directly toward the research in finding a cure. I met some really great people who've been a part of the fundraising efforts for years. Recently, the Long Island chapter lost one of their main contributors to the disease. She always impressed me as being extremely optimistic and driven. I hope, in some way, this might help.
Here's some info on the disease from the SCLERODERMA RESEARCH FOUNDATION website:
The word “scleroderma” is Greek for hard skin, the most visible characteristic of the disease. In fact, scleroderma is much more than this; chronic, complex and debilitating, it often affects the internal organs with life-threatening consequences. Depending on the subtype of illness, scleroderma can damage the lungs, kidneys and gastrointestinal tract with grave results. Peripheral vasculature damage due to scleroderma can result in loss of digits or limbs. In some cases, the joints and muscles are affected, resulting in a loss of mobility.
The symptoms and severity of scleroderma vary from one person to another and the course of the disease is often unpredictable. The number of women affected with scleroderma is disproportionately high with some estimates suggesting as many as four out of every five patients being female. The disease most often strikes between the ages of 20 and 50; however, children and those above age 50 across all ethnic groups are also affected.