05/01/2025
May is Ehlers-Danlos Syndrome Awareness Month!
For a rare disorder, I see a lot of clients with EDS and have been taking ongoing webinars to better understand this condition. As usual, I learn the most from my clients (including finding this graphic!).
Every person is an N of 1 and that particularly applies to folks living with EDS.
"People with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often identify themselves as zebras.
Medical students have been taught for decades that, âWhen you hear hoofbeats behind you, donât expect to see a zebra.â 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:
âBut you look normalâ
âYouâre too young to have so many problemsâ
âYouâre too oldâ
âYou canât have that, itâs too rareâ
âNo one knows what that isâ
The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. âSometimes when you hear hoofbeats, it really is a zebra.â
When you see a zebra, you know itâs a zebraâbut 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, and different experiencesâand 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."
- from https://www.ehlers-danlos.com/
