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38 m a s s a g e & b o d y w o r k n o v e m b e r / d e c e m b e r 2 0 1 9 education PATHOLOGY PERSPECTIVES Ehlers-Danlos Syndrome This Time It's Zebras, Not Horses By Ruth Werner What would you do if you couldn't depend on your body to hold you together? What if, at any time, some part of the glue that holds you together fails? Ehlers-Danlos syndrome (EDS) is a group of conditions that center on dysfunctional collagen— the main ingredient in our connective tissues. "When you hear hoof beats, think horses—not zebras." This is a saying in medicine that encourages practitioners not to be distracted by the possibility of rare or unusual explanations for common signs and symptoms—but sometimes this advice leaves people without an adequate strategy to cope with their challenges. For this reason, people with EDS are sometimes referred to as "medical zebras." This article has been much informed by my conversations with a massage therapist who lives with the hypermobility form of EDS (hEDS). She only learned that her long history of chronic pain— along with many other symptoms—was related to hEDS when her daughter, who has a more severe version of the same problem, was diagnosed. I am grateful for her generosity in sharing her story. "I don't remember when I didn't have pain. I feel like a giant Jenga tower. I never know what's going to pop in or pop out." COLLAGEN PRIMER Collagen molecules in humans are found in at least 16 distinct types and sizes. This substance is produced mostly by fibroblasts, although some epithelial cells also produce collagen. Procollagen molecules form in the endoplasmic reticulum of the producing cell, and then they are extruded into the extracellular matrix. A complicated series of chemical reactions causes the

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