UPDATE before the BIG UPDATE

Quite a big year for EDS.

In the news quite a bit. Lots about abdominal vascular compression syndromes.

And we are in the middle of the big conference - expecting a revison of classification and criteria - we are watching this space with interest.

And now a RNZ podcast with Anusha Bradley highlighting some of the EDS issues.

I have published an update of where things stand now at a clinical level so that if you think you may have EDS your can show your health care professional what it is all about in 1 fairly simple document.

Five years is a long time in a field moving this fast, so I've given the EDS Quick Facts a proper brush-up.

What's new. The genetics have finally started to shift — the kallikrein findings and the HEDGE study mean we can no longer say hEDS has no biological basis. There's a much fuller section on the comorbidities that often disable people more than their joints do: POTS, mast cell activation, gut problems, fatigue. A new section on abdominal vascular compression syndromes, written from the radiology side, on why two careful doctors can look at the same patient and see genuinely different things. And a section on being believed, which now has data behind it rather than just my impression of forty years.

It's an interim document on purpose. On 1 December 2026 the international diagnostic criteria for every type of EDS and HSD are being replaced — the first real update since 2017. HSD and hEDS look likely to be recombined.

So use this one until then. I'll rewrite it once the new criteria are out and I've had time to read them properly, rather than quickly.

See the Ehlers-Danlos tab and right below.

EDS-Quick-Facts-v3-0 update 2607.pdf

Download PDF • 864KB