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Accordingly several of the older papers and links shown below may now be outdated or obsolete in regards to diagnosing and categorizing, as I haven’t had time to comb through them all and update or annotate their links.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That said, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS), the issues remain the same.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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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!

DOCTORS IN A HURRY TO TREAT A PATIENT IN FRONT OF YOU: SEE THIS PAGE FOR DOCTORS

(If you’re not in a hurry to treat someone but rather just to learn more or diagnose with care, keep reading here.)

EDITOR’S NOTE February 26, 2023: This page is becoming overlong and unwieldy, so I’m going to break it up into several subpages I will link both on this page, and via the menu above with the various category headings. (E.g. Nutritional Links, Pain and EDS, etc. as you see them below.) Last updated March 31, 2024.


The following lists of links are now (2023) organized in several subsections. You may find it helpful to scroll quickly down the whole page to find a specific subsection first.

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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!

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ATTN DOCTORS:

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 freely available 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 launched a free online source of CMEs for doctors to learn about the new diagnostic criteria and category of HSDs too. UPDATE 2023: Alas, EDSA and CPP are no longer able to offer this resource at this time. But, they do have loads of very informative webinars archived on their site.

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

2023: I still assert that the collection of all forms of the Ehlers-Danlos syndromes is NOT RARE, JUST RARELY DIAGNOSED despite staunch efforts from the leading charity and doctors to keep it precious. Even before adding in those that meet the newly defined Hypermobility Spectrum Disorders criteria. These conditions are just not that rare, even if some indvidual types are. The collection as a whole IS NOT. (This meme must die as it’s literally killing people.)


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 MCD Resources here (Mast Cell Diseases)

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!

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)

VIDEOS

BIPOC and marginalized stories

EDS and Eye Health

Links to Pain and Fibromyalgia

Recovery Stories and Solutions

Nutritional Information and Links

The RCCX Theory (yes, technically a hypothesis yet)

Additional hypotheses on the causes of hEDS (hypermobile type) and HSD

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

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: