Monday, June 29, is the National Scleroderma Day when those of us touched by this disease ask our legislators to fund research and programs for us and our families. Scleroderma means hardening of the skin which is the most visible condition of this chronic connective tissue disease effecting some 300,000 Americans. The cause of the disease is unknown and treatment possibilities are limited often resulting in fatality.
Our family is touched by this autoimmune disease in that our daughter and niece was diagnosed with scleroderma several years ago. Initially, her feet and hands became purple in the cold and she felt tired and miserable. Eventually Amy had some problems digesting and eliminating her food as well as symptoms of pulmonary and heart distress. We were fortunate in that her husband had federal insurance and one family member was able to assist where insurance could not. Amy had stem cell transplant through Northwestern University Medical Center in Chicago a few years ago and has had remarkable results. Despite that miracle, she has tightened skin around her mouth, can’t tolerate cold, has to watch what she eats and takes many medicines to continue to fight this disease. It saddens us that some family members are continuously anxious that the disease could return.
Our family participates in the Rocky Mountain Chapter of the Scleroderma Foundation which hosts education days, monthly support groups around Colorado, fundraisers like “Stepping Out for Scleroderma” and “Food Fight” and advocates with our local and federal legislators. We have learned a lot, but there is much more research and treatments to be done and created.
We encourage our friends and neighbors here to learn about this disease at our 9 Health Fair where we usually have a table. Support your friends and neighbors who have this disease. If you have lived experience with scleroderma, please reach out to our local chapter and learn about cutting edge research and treatments (such as they are) and get support from your peers. You are not alone.