EDS Resources

March 20, 2017: And, the brand new, first in 20 years Ehlers-Danlos Syndromes diagnostic criteria and nosology are out here finally 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 July 2017. 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!

That said, MANY of the older papers and links below may now be outdated or obsolete, as I haven’t had time to comb through them all and update or annotate their links.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. I’ve been quite busy since the update as you can imagine, and have a lot of material to comb through and update. Thanks for your patience! And please share with all the doctors you can!

(The new as of March 2017) Hypermobility Spectrum Disorders are NOT RARE! Just RARELY DIAGNOSED!  Hypermobile EDS went back to being rare again – for now as of March 15, 2017.

Find commonly comorbid MCAD Resources here

Best introductory documents on Ehlers-Danlos Syndrome for doctors and patients

ER doctors should assume ALL patients have vEDS until proven fully otherwise!

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!)

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

Additional Misc Links

Related Resources:

image of a dessert spoon on wood

A precious spoon!