After reading the recent article about Wishing Star Foundation recipient Alejandra Rose Calzadillas, I admire her courage in dealing with systemic sclerosis, a form of scleroderma. Scleroderma, an autoimmune disorder that affects connective tissue in the body, may involve an individual’s skin, digestive system, heart, lungs and kidneys. While scleroderma can be life threatening, there are an estimated 300,000 individuals in the U.S. who live with hope of a cure. Like Ms. Calzadillas, it may take months or years before a diagnosis is obtained.
The Scleroderma Foundation, Spokane Support Group, has been meeting since 1997 to provide support and education to Inland Northwest residents. We meet at Deaconess Health and Education Center on the third Thursday of every other month at 7 p.m. Clinical hand specialist Julie Paull, OTR/L, will be speaking about hand therapy for individuals with scleroderma at our May 21 meeting.
Last week, Rep. Lois Capps, D-Calif., and Rep. Vern Ehlers, R-Mich., introduced H.R. 2408, the Scleroderma Research and Awareness Act, in the House of Representatives. This bipartisan legislation gives hope to those living with this devastating disease. According to the Scleroderma Foundation, the estimated total economic impact of scleroderma in the U.S. is $1.5 billion annually.
Roberta A. Choma
Scleroderma Foundation, Spokane Support Group co-leader