In Celebration Of Rare Disease Day: The Amish And Mennonites
In Strasburg, in the heart of Pennsylvania’s Amish country, is the Clinic for Special Children (CSC), a gene research clinic specializing in genetic problems of the “Plain People”, such as the Amish and the Old Order Mennonites. CSC is a nonprofit medical facility for children with genetic disorders and complex medical needs. CSC serves over 2,500 patients from 34 states and 17 countries, representing 150 unique genetic disorders.
CSC is founded in 1989 by Dr. D. Holmes Morton, a Harvard-trained pediatrician specializing in biochemical genetics, and his wife Caroline, after diagnosing a young Amish boy with Glutaric Aciduria Type 1 (GA1). GA1 is a metabolic disease that had previously been identified in only 8 other patients. GA1 is one of about 150 diseases or genetic mutations CSC has identified that “disproportionately affect the area’s Amish and Mennonites – a community of 60,000 descended from fewer than 100 settlers who came to Pennsylvania in the 1700s.” This has resulted in a limited genetic pool and the population is at high-risk for certain inherited genetic disorders, such as Maple Syrup Urine Disease and GA1. Per Dr. Holmes Morton:
“Special children are not just interesting medical problems, subjects of grants and research. Nor should they be called burdens to their families and communities. They are children who need our help, and if we allow them to, they will teach us compassion. They are children who need our help, and if we allow them to, they will teach us love. If we come to know these children as we should, they will make us better scientists, better physicians, and thoughtful people.”
Washington Post (10.21.14) article, “Pennsylvania clinic treats genetic disorders in Amish and Mennonite people”.
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