Radio Broadcast – Woodman Tower Lights Up for May EDS Awareness Month
By MICHAEL LYON • MAY 15, 2017
The Woodmen Tower in Omaha, NE, was lit up in black and white “zebra” stripes Monday night, 5/15 for Ehlers-Danlos Syndrome (EDS) Awareness Month, which takes place in May.
This iheart radio show in Omaha, NE featured Wendy Hamilton, Colleen McCoy, leaders if the Nebraska EDS Support Group, discussing Ehlers-Danlos syndrome.
EDS is a neglected and misunderstood disorder in medicine and is usually misdiagnosed or not diagnosed at all.
It’s a genetic condition that affects the way the body creates collagen, a fundamental building-block for tissue. This leads to a wide array of symptoms throughout the body’s systems, primarily in the joints or skin, with partial or full dislocations and secondary arthritis. Symptoms range from mild to severe.
Less commonly, symptoms may involve debilitating musculoskeletal pain or vascular issues. The problem with accurate diagnosis comes in part from the wide variance in symptoms.
You can learn more at about the symptoms of EDS at ehlers-danlos.com/what-is-eds.
EDS patients may have difficulty getting doctors to take their symptoms seriously enough to pursue a diagnosis. A saying in medicine is “When you hear hoofbeats, think horses, not zebras.” That maxim may steer doctors away from diagnosing rare diseases. Experts no longer regard EDS as a rare disease but the zebra has been adopted as the unofficial mascot of the EDS community.
EDS is not curable but it is treatable so a diagnosis is important.
If you believe you have symptoms of one of the EDS spectrum disorders, ask your doctor if a diagnosis fits your symptoms. While any doctor is able to diagnose EDS, many people are referred to a geneticist. EDS is a genetic disorder and geneticists are most adept at distinguishing those diseases as well as doing any testing necessary to differentiate EDS from the more than 200 other heritable connective tissue disorders..
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