People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.
Education and awareness
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
People with rare and chronic diseases spend years searching for answers:
“But you look normal”
“You’re too young to have so many problems”
“You’re too old”
“You can’t have that, it’s too rare”
“No one knows what that is”
The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD, reducing the time to diagnosis, and improving pathways to care.
Advocacy and support
A group of zebras is called a dazzle.
Living with an EDS or HSD is not always easy. We take comfort and pride in the strength and support of our community, and what we can achieve together. Together, we dazzle!