The Oregon chapter of the Scleroderma Foundation holds bimonthly support group meetings at Legacy Good Samaritan Medical Center in Portland. For more information about the chapter, which serves Southwest Washington, send an email to firstname.lastname@example.org.
The chapter also accepts donations.
A Ridgefield woman is receiving recognition for raising awareness about a little-known autoimmune ailment.
Donna Stone was named the Scleroderma Foundation's Support Group Volunteer of the Year at the foundation's 2013 National Patient Education Conference in Atlanta. For Stone, the honor was the culmination of three decades of work helping organize a local support group for sufferers of scleroderma, a disease that primarily affects a person's skin and collagen.
"It's a vicious disease," Stone said. "It's much more serious than the public knows because it's an orphan disease"
"Orphan diseases" are uncommon and, thus, receive little attention from drug manufacturers or researchers. Nationwide, medical professionals believe fewer than 500,000 people are afflicted with scleroderma. Stone's organization -- the Oregon chapter of the Scleroderma Foundation, which also serves Southwest Washington -- has around 500 members.
The disease, sometimes referred to as systemic sclerosis, attacks connective tissue in the body, often turning the skin hard like wood and restricting blood vessels until extremities lose feeling. In some cases, the disease can spread to internal organs, especially kidneys and lungs, leading to a person's death.
Doctors diagnosed Stone with scleroderma in the early 1980s. Although many medical professionals didn't know what was going on -- Stone was feeling rundown and couldn't close her hands -- a dermatologist suspected a rash on her chin could be a sign of scleroderma and suggested she see specialists at Oregon Health & Science University.
Very little was known about the disease in the 1980s, Stone said, leading to the creation of regional support groups where people could talk about the malady and share treatment options.
Maria Rivelli, a board member of the local chapter, said Stone's recognition was long overdue. Stone has worked tirelessly to make the support group meetings inviting and informative, Rivelli said.
Stone attracts speakers, manages outreach and makes herself available for one-on-one sessions for people with scleroderma who have questions.
"It's all very upbeat," Rivelli said. "What helps the most is, you learn what others are doing for their disease."
When Rivelli was diagnosed with the disease in 1992, medical journals said she could expect to live for five to seven more years. Two decades later, and Rivelli is managing her disease with the help of peer support, despite 16 hand surgeries in 15 years and the loss of eight digits.
The support group's help, with Stone's assistance, has been immeasurable, Rivelli said.
Stone said the national recognition came as a complete shock. She never expected to be front and center. But knowing people are appreciative of her time and effort is a generous reward.
"It was a total surprise," Stone said. "I felt very honored. It gave me a feeling that maybe I'm doing something that will help people."