Accordingly several of the older papers and links shown belowmay now be outdated orobsolete in regards to diagnosing and categorizing, as I haven’t had time to comb through them all and update or annotate their links.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That said, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS), the issues remain the same.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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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 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 September 9, 2023.
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 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 just 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.
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.)
Bonus: Dental 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.
I can really use your support to keep this site up to date in any way and at any level here thank you!
EDS Unplugged – YouTube Channel run by Cassandra and Marcia, two Black women with EDS
Please share your story as a non-white person with me at H2OhTWIST<at>gmail<dot>com. And any others you can find. I want to boost voices of color in this very white EDS space, thank you! (All of the diagnostic criteria for both EDS and MCAS all refer to white bodies and skin, and this desperately needs to change!! And we especially need to know what unique challenges you face in the white dominated medical space.)
* 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.