The Ehlers-Danlos syndromes (EDS) and hypermobile spectrum disorders (HSD) are two conditions in which people frequently identify themselves as zebras.
“When you hear the sound of hooves, think zebras, not horses.” This is a term that medical students are taught during the course of their training.
The term “zebra” is used in medicine to refer to sickness or condition that is extremely rare. It is taught to doctors to presume that the simplest explanation is typically right in order to prevent patients from receiving incorrect diagnoses for uncommon diseases. Doctors become accustomed to dealing with common ailments.
However, many medical experts appear to have forgotten that “zebras” really exist, making it more difficult for those suffering from rare diseases to gain a diagnosis and receive treatment. Ehlers-Danlos syndrome (EDS) is considered a rare ailment, and as a result, those who suffer from EDS are referred to as medical zebras. This identity has now been adopted by people worldwide, thanks to social media, and it is helping to bring our community closer together.
Even though you can tell when you are looking at a zebra by its stripes, no two zebras are exactly alike, just as no two persons who have Ehlers-Danlos syndrome or HSD are precisely the same. We all have different symptoms, different types of Ehlers-Danlos syndrome, and different experiences. Still, we are all working toward a time when a medical professional can recognize someone who has Ehlers-Danlos syndrome or HSD right away, reducing the time it takes to diagnose them and improving the pathways to care for those who have it.
The EDS community
EDS picked the zebra as its symbol because “sometimes when you hear hoofbeats, don’t expect to see a zebra,” according to the EDS community. Accordingly, the Ehlers-Danlos Society, which includes patients, carers, healthcare professionals, and supporters, is dedicated to the goal of “bringing us closer to a time when a medical expert can detect someone who has an Ehlers-Danlos syndrome instantly.”
Following the National Institutes of Health, Ehlers-Danlos syndrome (EDS) is an uncommon disorder that affects at least one out of every 5,000 persons worldwide (NIH). More people became aware of the syndrome in October of this year when popular singer-songwriter Sia revealed that she suffers from EDS in Twitter posts. Those with EDS reacted in droves on the internet, frequently referring to those outside their community as “zebras.”
According to the international Ehlers-Danlos Society, a common term in medicine is “When you hear hoofbeats behind you, don’t expect to see a zebra.” As a result, medical personnel is often instructed to look out for more frequent ailments rather than checking for ultrarare diagnoses. People suffering from EDS and similar conditions may find themselves in a bind due to this approach, searching for reasons regarding their health that few doctors can supply.