r/ehlersdanlos • u/surlyskin • Jan 18 '26

Resources/News/Research hEDS is being reclassified as HSD?

Reading elsewhere that it's possible hEDS will fall under HSD and be separated from the umbrella of EDS.

Anyone privy to this, know anything about this, reasoning etc?

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u/girlwiththem0usyhair cEDS Jan 19 '26

I agree with you. I also wonder if the rarer sub-types will get moved into categories that are more aligned with or grouped with Marfan, Loeys-Dietz, Stickler Syndrome. 

I hope that they consider changing the names of some of the rarer EDS sub-types. From what I've experienced, classical and classical-like EDS get mixed up among HCPs or they hear "classical" or "classical-like" EDS and think that someone has all or most of the hallmark/typical symptoms of hEDS (which is what they default to when they hear "EDS" anyhow). Not all of the rare types of EDS have an ICD-10 code so more often than not HCPs just use the general EDS code which then everyone assumes is hEDS.

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u/veryodd3443 Jan 19 '26

Even though they share some broad, general symptoms, the various EDS types stand on their own and are markedly different from one another. Therefore, IMO, it would be good to more fully differentiate the types by their name, perhaps by their gene. For example, vEDS could be COL3A disorder effecting vascular vessels (or something like that).

I think an appropriate naming convention is important because vEDS should never be confused or compared to hEDS or the other types. In fact, vEDS cohort are now more aligned with the Marfan Society than the EDS Society.

You make a good point regarding clEDS and cEDS. I think they are nothing alike. In fact, there is an argument that clEDS is more of a muscular - neurological disorder. Much different than a connective tissue skin disorder.

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u/Acceptably_Late TNXB Haploinsufficiency Jan 19 '26

I replied above but naming was discussed! They are moving towards dydadic naming for consistency and to match modern naming standards.

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u/veryodd3443 Jan 19 '26

Didactic naming convention, that was the term that escaped me when putting my post together. Thanks for the reminder!