On the Prevalence of EDS

And hypermobility in general. We may really NOT be medical “zebras” (so rare) after all…or not some of us.

Debates about the prevalence and rarity of EDS and HSD have raged for over a decade. Science is always lagging, as it takes multiple people noticing a condition before science will start looking into it, and eventually describing and verifying its prevalence. And we often cherry-pick the grossest most visible signs of the rarest types of a condition to study, as these are the low-hanging diagnostic fruit. Science can never get ahead, accordingly.

But just as with the rate of autism (steadily increasing), the rate of EDS and HSD are steadily increasing from increasing awareness both by patients and medical practitioners and more. Many of us feel strongly that they were there all along, just not always recognized in the better masking and passing or milder forms – much as I had until 2012 when I fell apart suddenly and badly, making me hit the medical radar finally. (And going from walking to wheelchair in three weeks at 45.) And yes, may also be increasing as more of us to meet and mate and reproduce than before. (Note autistic “pockets” like Silicon Valley, etc.)

Yes, some forms of EDS are rare, even extremely so. (I’m friends with a mother and son who are the only two we know of with their SNPs so far. So yeah, they’re pretty dang rare!) Much like how syndromic autism comes in many flavors, I think EDS will continue to also. That is, scientists like the Norris Lab at MUSC and elsewhere will continue making cool discoveries that explain yet more subsets of us. However, I will go to my grave saying that I don’t think the most common form, hypermobile EDS (hEDS) and the HSDs (which may well be one and the same condition, just differing phenotypes) is not rare at all, at easily 2% or more as Tinkle et al showed in 2017.

No, you should not have to burn out or land in a wheelchair to hit the medical radar like I did. Whence my entire website, especially the When Else to Suspect Page. Here are some additional papers showing just how common the trait of generalized joint hypermobility is, along with the symptomatic forms like EDS, HSD and more. This list is not comprehensive. Updated March 9, 2025