"Scleroderma? Yes, I know something about it."
More often than not, news of local scleroderma people in any Oregon newspaper is found only in the obituaries.
Unlike most of us, I know more about scleroderma than I ever desired or imagined. This autoimmune disease that touches an estimated 300,000 in America alone comes in two forms, localized and systemic, and generally afflicts four times as many middle-age women than men. Children, however, are not immune. [...]
Scleroderma affects everyone differently. My wife Fay has lived with the misery and pain of this disease for the past 20 years, manifesting itself in several ways, [...]
Scleroderma also means Fay has to avoid direct sunlight, as well as being hypersensitive to hot and cold extremes. Gloves are a constant, even during the summer when air conditioning gets really cranked up in many public venues. [...]
Although the Oregon chapter's volunteer activists regularly have to work through their own health challenges, they rarely tire or fail to remain optimistic. Only a few weeks after her surgeries, my wife Fay found the strength to meet with US Congressman Earl Blumenauer as part of an awareness team effort. Perhaps the most striking chapter example, though, is that of Maria Rivelli of Portland, organizer of the chapter's "Stepping Out to Cure Scleroderma" benefit walk set for this July 30 in Multnomah Village and Gabriel Park.