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 are undertaking the first two -year review of the criteria now, which may lead to some changes. Stay tuned.

We are grateful to The Ehlers-Danlos Society and The American Journal of Medical Genetics for making these available to this end. Help update all of our doctors by sharing this material!

That said, several of the older papers and links shown below may now be outdated or obsolete, as I haven’t had time to comb through them all and update or annotate their links. (And I’m not responsible for the various sources.) That said, not all will be, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS).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.)

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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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 8/22/21.

7/3/21: 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.

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 NHS in England launched their own brand new EDS Toolkit for GPs online too! (And I helped craft it among many other smart patients, scientists and doctors.) Currently hosted by teh Royal College of General Practitioners in Lond (2018-2021), it is also freely available to everyone worldwide, so please do share far and wide! By doctors, for doctors with latest info. Currently hosted by RCGP, this may change later in 2021, TBD.

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.

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 “rare” again according to the doctors deciding the definitions – for now (2017).

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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.)

VIDEOS

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

BIPOC and minority stories

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. (I myself am proof of this – I’m back out of my wheelchair on high dose Vitaminc C, calcium, magnesium and zinc along with water therapy and cycling and the Cusack Protocol. I still can’t walk far, but I did bike across the Golden Gate Bridge in July 2014 for the win!)

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

Links on Cranio-cervical instability, Chiari, Tethered cord and related issues

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: