Health Beat
June is Scleroderma Awareness Month. Scleroderma affects some 300,000 Americans, yet it's still considered a rare disease. It can affect anyone at any age, although women and those with a family history are diagnosed more often. For unknown reasons, the body produces excessive collagen causing scarring or thickening in the skin or internal organs. The result can be disfigurement, disability, or death. With no known cause or cure, treatment and management are key. But that means getting a diagnosis early and that can be challenging. Patricia Fennell, MSW, LCSW, is a scientist and social worker specializing in providing care for people living with chronic illness. She's active in the scleroderma research community. As she points out, because this is a rare disease, too many primary care and internal medicine doctors are not familiar with the symptoms and that can mean a delay in diagnosis and treatment. Because getting a diagnosis can be a challenge, Fennell says it's important for patients to know that scleroderma can affect many body parts. She suggests that anyone who suspects they are suffering from scleroderma should get that diagnosis. Check out the Steffens Scleroderma Foundation (steffensscleroderma.org) or reach out locally at 518-396-5580. The mission of the Steffens Foundation is to support and promote research to find a cure, increase awareness and understanding of scleroderma and related disorders. Scleroderma symptoms include: Hardening and tightening of patches of skin, shiny skin, hair loss, white lumps under the skin due to calcium deposits, exaggerated responses to cold temperatures and emotional stress. There may be numbness or pain in fingers and toes. The heart, lungs and kidneys can be affected. Medical care is usually provided by a rheumatologist. But given the wide ranging impact of this disease, Fennell says it's important for those diagnosed to have emotional support. She suggests bringing a family member or friend to appointments and that might mean utilizing telehealth visits. Don't let panic guide your decisions. Collect information and be your best advocate. And her last reminder: stay in the moment.
Benita Zahn, DPS, CHWC Health and Wellness Coach Benitahealthcoach@gmail.com benitahealthcoach.com