(Originally appeared 07/24/11, Portland IndyMedia)
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, including interstitial lung disease (already destroying nearly half of her lung capacity), and horribly painful finger calcium deposits and reduced blood flow in the hands known as Raynaud’s phenomenon. On top of all that, she experienced a 6×11-cm pelvic calcium growth that required two major surgeries last year with absolutely no guarantee it won’t come back.
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.
The disease forced my wife to prematurely end her career as an x-ray technologist when she could no longer properly handle some of the associated equipment because of her increasingly disabled hands. Constant aches and pains, cramps, numbness and tingling sensations all over her body now requires regular physical therapy treatments to get at least some measure of relief.
All this and Fay is considered lucky compared to others in the local scleroderma community. Richard Bates of Hillsboro was so ravaged by scleroderma that he needed a double lung transplant. At one time, the skin on the upper body of a female friend in NE Portland had turned so hard and immobile you could literally tap on it like a piece of wood (scleroderma translates into “hard skin”). Erion Moore II of Tigard, until just a few years ago a promising amateur basketball player working at a juvenile probation camp who was looking forward to a full-time career in law enforcement, has been so debilitated that like a frail elder who walks with a cane, this young man now seriously worries about not being able to lift himself off the floor or ground if he stumbles and falls.
Oregon and SW Washington are more fortunate than a lot of places because the local scleroderma support group has been an active presence here since the early 1980’s. For decades, regular free support group meetings have been held at Legacy Good Samaritan Hospital under the guidance of Donna Stone to provide comfort, understanding and information to countless numbers of people living with scleroderma. This outstanding community health resource has been so valuable because even today many doctors continue to have difficulty diagnosing and treating scleroderma, which has no known cause or cure.
The support group led by Stone, herself a scleroderma patient, has evolved into the Oregon Chapter of the Scleroderma Foundation, a national patient education and advocacy nonprofit. With no paid staff, Stone, Bates, Liz Orem-Bedel, Janine Wong, Alice Anson, Denise Bates, Maria Rivelli, myself and a small handful of others struggle to get out the word about scleroderma and the people it affects locally. Annual education seminars, plant sales, fair booths, national conference representations and benefit walks are some of the events and activities employed by the chapter. Additionally, a sister support group has opened in Bend under the tireless direction of Ann Havelock. As a result, producer Janice Bangs of KATU TV Channel 2’s “AM Northwest” program has been our media champion by providing annual awareness segments since 2006, and Debra Gil at Fox 12 has generously covered our recent walks. But more often than not, news of local scleroderma people in any Oregon newspaper is found only in the obituaries.
Remarkably, my family’s scleroderma experience does not end with my wife. I have an incredibly strong sister-in-law back in the Midwest who also lives brilliantly with this disease. Years of scleroderma involvement have given her countless medical emergencies, hospital stays and procedures. It has gotten to the point (4 hospital admissions already this year) where she demands to simply know “what are you going to do in the hospital that can’t be done at home? If it can be done at home then that’s where it’s done.”
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.
For the sixth year running she is daily attending to the issues great and small of pulling together the state’s largest annual scleroderma fundraising and awareness building event. This year, however, she is simultaneously preparing for yet another in a long line of hand surgeries due to her own battles with this malady.
“I am not sure where I am at with hand surgery,” she noted in a group email. “Could have it next Wednesday, but that would be only 3 days before walk, which is not good. If not then, I would have to wait til Friday, Aug. 5th.”
Talk about multitasking.
With the continued efforts and unflagging commitments of Oregon and Washington state folks like Maria, Fay and their chapter colleagues, a lot more people in these parts will soon be able to say that they too now know a little bit more about scleroderma.