A medical Zebra is a term for someone with a surprising or rare diagnosis. This expression is credited to Dr. Theodore Woodward, an infectious disease specialist. While teaching at the University of Maryland School of Medicine in Baltimore in the 1940s, he would tell his students, “Don’t look for zebras on Greene Street,” (the street outside of the hospital); if they heard hooves it was most likely horses, which were common in that place and time. The point was to get physicians to learn to look for the common explanation of symptoms when diagnosing, instead of something more unlikely. Over time the quote evolved into, “When you hear hoof-beats, think horses, not zebras.”
As a medical Zebra, I wish I had a diagnosis for every time a physician said to me, “No…that’s really rare…it’s probably just a virus.” Even after being diagnosed with Ehlers-Danlos, which is supposedly rare, doctors have been reluctant to test for other rare conditions that are related. I’ve found in the last five years of connecting with other Zebras online, that people with chronic illnesses tend to have several conditions that are interrelated and often exacerbated by each other. Those with Connective Tissue Disorders, whether Autoimmune, Genetic, or Environmental, can have multiple rare conditions. For example, many of us with Ehlers-Danlos Syndrome also have a combination of Dysautonomia, Gastroparesis, MCAD, Spondylolisthesis, and Chiari, with suspected metabolic or mitochondrial disorders. I’m confident that with time, definitive genetic links will be discovered that prove how these conditions are related to Hypermobility. Once epigenetic expression is better understood, science will someday have the tools to prevent, treat, and cure these conditions. In the future of personalized precision medicine, people will not have to struggle decades for an accurate diagnosis and appropriate care. That future begins now.