EDS Resources

When to Suspect EDS

And finally the brand new, first in 20 years Ehlers-Danlos Syndromes diagnostic criteria and nosology are out here in full as of March 15, 2017.

Update 2/21/21: The Ehlers-Danlos Society say they are undertaking the first two -year review of the criteria now, which may lead to some changes. Stay tuned.

Accordingly several of the older papers and links shown below may now be outdated or obsolete in regards to diagnosing and categorizing, as I haven’t had time to comb through them all and update or annotate their links. (I have updated my Diagnosing EDS page however.) I usually list newest on top, to oldest, on the bottom for this reason also.

That said, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS), the issues remain the same. (Like when we demoted Pluto to a dwarf planet in 2006, right? It didn’t change a spot. We just re-classified it.)

So please take some with a grain of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here. I’ve been quite busy since this development as you can imagine, and have a lot of material to comb through and update. Thanks for your patience! Last updated 1/19/23.

The following lists of links are organized in several subsections, including general, pain and hypermobility spectrum disorders and EDS, RCCX Theory, hEDS hypotheses and research, nutritional support and links, recovery stories, and more. You may find it helpful to scroll quickly down the whole page to find a specific subsection first.


July 2021: Here is a handy “School Toolkit” now via the HMSA and EDS UK in 2021. While it still refers to the former diagnosis of JHS, vs HSD for regional and others reasons*, all of the info still applies, whatever the hypermobile condition. Check it out and share with your teachers.



April 2019: The Ehlers-Danlos Society launched a brand new Project EDS ECHO with FREE CMEs to help connect all practitioners with experienced colleagues to cuss and discuss all the latest info about the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (new since 2017). Please check it out! (Especially as we are revisiting the diagnostic criteria again already in 2021-22. You can stay updated via this program.)

May 2018: The EDS Toolkit for Doctors spearheaded by fellow EDS patient and GP Dr. Emma Reinhold (who tapped me to contribute among others) was originally hosted by the Royal College of General Practitioners in London. It has migrated and is now hosted by EDS UK as of January 2022, here: https://gptoolkit.ehlers-danlos.org

2017: EDS Awareness just launched a free online source of CMEs for doctors to learn about the new diagnostic criteria and category of HSDs too.

All past EDNF and newer EDS Learning Conference slides 2012-present via The Ehlers-Danlos Society

And I will now posit that the newly recognized (as of March 2017) Hypermobility Spectrum Disorders are NOT RARE! Just RARELY DIAGNOSED!  Hypermobile EDS went back to being technically “rare” again according to the people deciding the definitions – for now (2017). (I still don’t personally think it’s really rare, just rarely recognized.)

BonusDental Freezing (Numbing) Formula that works best for many patients with CTDs:

1/2 mepiva w/out epi, 1 art w/epi 1:100,000

“art” stands for “articaine”.*
We need low to no epi mixed in or it goes out too fast.
 (Reference: dental numbing, dental freezing)

* Some do well with a combo of articaine and bruvidicaine as well.

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Find commonly comorbid MCAD Resources here

Best Introductory Documents on Ehlers-Danlos Syndrome for Doctors and Patients

ER doctors should assume ALL patients have vascular EDS (vEDS) until proven fully otherwise!

Pain and Hypermobility Disorders of all kinds (HSD, EDS, etc.)


EDS Organizations and Physician Websites

Invisible Disabilities Organization (not EDS specific, but we fall under their umbrella)
The Coalition Against Pediatric Pain (very EDS aware group)

Links to Fibromyalgia

* I hasten to note that apparently Atlanto-axial instability from any cause, including head and neck injury (e.g. whiplash) but also EDS can lend to or cause “Straight neck syndrome” as described here. Dec 2022

Lipedema and lymphedema and EDS/HSD

We’re finding Lipedema (aka Lipoedema) to be a fairly common comorbdity / co-occurring condition in the hypermobile community, as well as MCAD community. So I’ve added this section in November 2021.

This short resource list is blatantly stolen with permission from good friend and author of More Than Fat:

Additional articles of interest:

BIPOC and marginalized stories

EDS and Eye Health

Recovery Stories and Solutions

I’m including these stories from EDSers and others who have made partial or semi-full recoveries from their EDS and POTS onset “storms” or statuses via various means, and to show that there are some things you can do about it that will help to varying degrees. THESE ARE NOT CURES, just supportive therapies to be very clear.

(I myself am proof of this – I’m back out of my wheelchair on high dose Vitamin C, calcium, magnesium and zinc along with water therapy and cycling and the Cusack Protocol. I still can’t walk far and still injure in my sleep every night, but I am a far sight better than I was in 2012.)

Vitamins and Minerals

Vitamins and Minerals

Nutritional Information and Links

Vitamin C helps to lay in new collagen, and the more you have the better, faulty or not. However, those who are sensitive or allergic to corn will react to the most common form: ascorbic acid, which is corn based. Alternative forms include: Sago palm based, camu camu, rose hips, tart cherry juice and moringa leaves. And magnesium helps build smooth muscle fiber. See the following links for more relevant information to help rebuild:

The RCCX Theory

Links relating to the RCCX Hypothesis / Theory which may explain the “Chronic Constellation” (my term) for so many major comorbidities with as yet unexplained hEDS/hypermobility

Additional hypotheses on the causes of hEDS (hypermobile type)

Links on Cranio-cervical instability, Chiari, Tethered cord and CSF Leaks and leaking

Anesthesia in hypermobility and EDS

Additional Misc Links

EDS Resources
A precious spoon!

* from the School Toolkit note above: the HMSA and EDS UK chose to keep referring to the former label and diagnosis of Joint Hypermobility Syndrome instead of the new HSD as this is still the current working diagnosis in the UK for those who don’t meet the strict requirements for an EDS diagnosis. Further, there is no ICD-9 code for HSD. And, as someone noted, the 2017 diagnostic criteria have not been validated for diagnosing, and were primarily intended for research purposes. JG 7/3/21.

Related Resources: