First Wednesday of the Month = Ehlers-Danlos Syndrome (EDS) Awareness Day! 10/07/26
October is Ehlers-Danlos Syndromes (EDS) Awareness Month đź’ś
Invisible doesn't mean it doesn't exist. EDS is a complex group of connective tissue disorders, and its invisibility is often the biggest hurdle to getting a proper diagnosis.
To truly understand EDS, you have to look at how it is categorized:
The 12 Genetic Subtypes: There are 12 classified subtypes of EDS that are distinctly rare and have identified genetic markers available for testing.
The hEDS "Catch-All": The 13th type is Hypermobile EDS (hEDS). While researchers are actively working to finalize the definitive marker that was just identified, it currently serves as a broad category. In the future, science will likely uncover numerous subcategories within hEDS to map out the specific bodily systems it impacts.
The Diagnostic Gap: Because of this evolving science, EDS affects anywhere from 1 in 500 to 1 in 5,000 people. It is nearly impossible to nail down an exact number because so many people go undiagnosed for years—or even decades.
Misdiagnosis is common. Medical dismissal is even more so. But awareness changes that.
Have you ever been told you are hypermobile or "double-jointed"?
If you have, you owe it to yourself to advocate for proper EDS screening. EDS isn't just about flexible joints—it impacts your health systemwide and heavily matters for your current and future medical care.
Thank you for being here. For learning. For sharing. Your understanding matters more than you know.
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