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. It was initially rumored they would only be freely available for 3 months (through June 2017), but they appear to still be as of January 2018. So possibly for the indefinite future? We can hope!

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That said, several of the older papers and links shown below may now be outdated or obsolete, as I haven’t had time to comb through them all and update or annotate their links.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.)

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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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

ATTN DOCTORS:

April 2019: The Ehlers-Danlos Society just 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!

May 2018: The Royal College of general Practitioners in London, England just launched their own brand new EDS Toolkit for GPs online too! (And I helped craft it.) It is also freely available to doctors worldwide, so please do share far and wide! By doctors, for doctors with latest info.

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

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:

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!

Related Resources: