Changes coming to EDS classification December 2026

It’s easy for me to forget that not everyone has their ear to the ground about the latest news of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. So I realized I should probably hatch a quick post to catch folks up who aren’t following me on socials. (No judgment, in fact, I sort of envy you.)

As most of you know, The Ehlers-Danlos Society, aka “TEDS” for short hatched the new diagnostic category of Hypermobility Spectrum Disorders ten years ago now in late 2016, formally announced in March 2017 to much fanfare. This was meant to catch all those who were either a) – not bendy enough to meet the newly tightened (by them also) hEDS diagnostic criteria, or b) – if bendy (even very), they did not tick off enough boxes on the hEDS checklist to pass that diagnosis. This caused quite a stir in the community, as many people formerly diagnosed with hypermobile type EDS (hEDS) got “demoted” to a form of HSD, which has no ICD 10 (or 11) code, was not recognized by medicine yet (and still isn’t everywhere, ten years later), and which no one seemed to take very seriously no matter how hard TEDS tried to convince us otherwise.

The longer I looked at it, the more it looked to me a lot like primarily the male phenotype of hEDS, with some exceptions. And just like hEDS, it became the final catch-all bin for those who did not show signs of any of the 12 other very rare types of EDS, nor passed the hEDS checklist after that, nor any other similar connective tissue disorders (CTDs) like Marfan, Stickler and Loeys-Dietz syndromes to name a few. Technically doctors are supposed to properly rule out all 20+ potential conditions someone could have before they diagnose someone with hEDS, and or HSD. I’m quite sure less than 20% ever do. They’re much too busy and don’t have enough time or bandwidth to do that in modern appointments.

So, imagine the community’s angst when it was just announced this past month (April 2026) at the UVA EDS Symposium that the Society’s workgroup who hatch these things are planning to RECOMBINE the forms of HSD back in with hEDS in the December 2026 update! Well! Here we go again.

How so Jan? Isn’t this a good thing? Well, yes, IFF (if and only if), they call the final combo hEDS still, so it’s given proper clout/caché, and it’s kept within the EDS bin, despite not being monogenic like all the other forms of EDS. If they either call it hEDS, but dump it out of the main EDS bin, or worse, call it something else entirely (which I was thinking might be okay for a minute until I gave it another minute), it stands to once again be like the unwanted step-child of the EDS world, who is given short shrift, and just ignored in the corner. Because, doctors are just like everyone else: they are enamored of the more precious types and people. So, they seriously don’t care nearly enough about the hypermobile type of EDS, much less the currently recognized (April 2026) forms of the HSDs.

(Side note: I’m also well aware that many folks who really do have rare types are also ignored, and often misdiagnosed as having hEDS or HSD too! That’s call diagnostic overshadowing and also needs to stop. I see you.)

On a good note, this will hopefully simplify things, but… that remains to be seen! And, TEDS CEO Lara Bloom who announced this said “they are still deciding what to call it” so, it’s not even pinned down yet. Oof. It’s getting awfully close! (December will be here in a jiffy, the way things are going. I’m still trying to catch up from 2025 myself!)

In other sad news, beloved EDS champion UK Dr. Rodney Grahame died on March 29th, 2026 too. And, the 52 KDn fibronectin fragment uncovered in late 2024 as a potential biomarker for hEDS and HSD has NOT been validated yet, despite two additional tries, sigh. (I’m so pulling for you, little fragment! Still am. Among other potential protein biomarkers.)

Okay, I’m going to stop here for now. I’m behind on almost everything. I’m still coming out of my third-worst flare, caused by a foolish attempt to dive back into the tech field early this year. (It was worth a try, but I washed out. Hard and fast.) It’s going to be an interesting winter, I’ll just say that much.