EDS Resources

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Accordingly several of the older papers and links shown below may now be outdated or obsolete in regards to diagnosing and categorizing, as I haven’t had time to comb through them all and update or annotate their links.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That said, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS), the issues remain the same.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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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

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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 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.

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.)

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!

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!

The Ehlers-Danlos Syndromes GP Toolkit via the EDS UK January 2022 (formerly via RCGP 2018)
Handy hypermobile Ehlers-Danlos Syndrome Diagnostic checklist for doctors March 2017 via TEDS
Hypermobile Ehlers‐Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes 2020 Cortney Gensemer Randall Burks Steven Kautz Daniel P. Judge Mark Lavallee Russell A. Norris
The Beighton Score as a Measure of Generalized Joint Hypermobility 2021 Malek, Reinhold, Pearce
2017 EDS International Classification via The Ehlers-Danlos Society March 2017 (this includes all 18 papers in the American Journal of Medical Genetics for now)
Ehlers–Danlos syndromes, hypermobility spectrum disorders,and associated co-morbidities: Reports from EDS ECHO 2021 Hakim, Tinkle, Francomano
2017 EDS International Classification via The EDS for non-experts (lay person’s papers) 2018
FREE Ehlers-Danlos Syndromes Physician CME Education online via EDS Awareness 2017
2017 Update for Clinicians by Dr. Alan Hakim (UK)
Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history (pages 48–69) 2017 Brad Tinkle, Marco Castori, Britta Berglund, Helen Cohen, Rodney Grahame, Hanadi Kazkaz and Howard Levy
Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations 2023 Russek, Block, Byrne et al
Characterization of bleeding symptoms in Ehlers-Danlos syndrome Kumskova, Flora, Staber et al 2023
Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature 2022 Monaco, Choi, Uzun, Maitland and Riley
Frequency and co-occurrence of comorbidities in the Ehlers-Danlos Syndromes 2021 Brock, Chopra, Maitland & Francomano
Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison 2019 Joanne C Demmler, Mark D Atkinson, Emma J Reinhold, Ernest Choy, Ronan A Lyons, Sinead T Brophy
All past EDNF and newer EDS Learning Conference slides 2012-present (2022)
They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations 2021 Langhinrichsen-Rohling, Lewis,McCabe et al
Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health Nov 2021 AmJMedGen Csecs, Dowell, Savage et al
The Association Between Fibromyalgia, Hypermobility and Neurodivergence Extends to Families: Brief Report Pre-print March 2023 Clive Kelly, FRCP, MD
Mechanobiology in the Comorbidities of Ehlers Danlos Syndrome April 25, 2022 Shaina P.Royer and Sangyoon J. Han
The Role of Cell Adhesion and Cytoskeleton Dynamics in the Pathogenesis of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders 2021 Malek, Koster
The Dermatological Aspects of hEDS in Women 2021 Cynthia O.Edimo^aJulia R.Wajsberg^a1SammiWong^a1Zachary P.Nahmias^bBernadette A.Riley^c
Heritable disorders of connective tissue: Description of a data repository and initial cohort characterization. 2019 Pubmed Bascom R¹, Schubart JR², Mills S^1,3, Smith T³, Zukley LM³, Francomano CA^3,4, McDonnell N^3,5
Dermal fibroblast-to-myofibroblast transition sustained by αvß3 integrin-ILK-Snail1/Slug signaling is a common feature for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders 2018 Nicoletta Zoppi, Nicola Chiarelli, Silvia Binetti, Marco Ritelli, Marina Colombi
ER Safety Tips for Ehlers-Danlos Syndrome Patients – Ellen Lennox Smith via PNN 2017
Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond Pezaro, Pearce, Reinhold April 2018 British Journal of Midwifery
Ehlers-Danlos syndrome: how to diagnose and when to perform genetic tests 2015 Dr. Glenda Sobey UK (still useful to start with)
Dystonia and its Treatment in Ehlers-Danlos Syndrome 2018 Hamonet, Ducret et al
Dystonia in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome hypermobility type) 2016 Hamonet, Ducret, et al SOJ Neurology
New variants in COL5A1 gene among Polish patients with Ehlers-Danlos syndrome: analysis of nine cases 2019 Anna Junkiert-Czarnecka, Maria Pilarska-Deltow, […], and Olga Haus
Dr. Linda Blustein discusses the Hypermobility Spectrum Disorders and EDS with Dr. Ferguson December 2018 (podcast)
hEDS Together– new (in 2020) UK website for hEDS/HSD info
New 14th type of rare (AR) EDS discovered 2018: AEBP1
Application of immunotherapy for neurological manifestations in hypermobile Ehlers–Danlos syndrome 2018 Manabu Araki, Youwei Lin, […], and Takashi Yamamura (aka “NINJAs”)
Orthopedic management of the Ehlers-Danlos syndromes 2017 Ericson Jr, Wolman
A case of mosaic Ehlers-Danlos syndrome 2012 (mosaicism)
Brain injury unmasking Ehlers-Danlos syndromes after trauma: the fiber print 2015 Hamonet, Fredy et al
Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations – Castori et al 2012 Journal of Dermatology
Ehlers-Danlos Syndrome Hypermobility type: A Much Neglected Multi-Systemic Disorder Gazit, Jacob & Grahame 2016 Rambam
Ehlers-Danlos Syndrome and Hypermobility Spectrum Patient symposium NYIT 2017 via EDS Awareness
Spontaneous Intracranial Hypotension: 10 Myths and Misperceptions 2018 Kranz, Gray, Amrhein
Transcriptome analysis of skin fibroblasts with dominant negative COL3A1 mutations provides molecular insights into the etiopathology of vascular Ehlers-Danlos syndrome 2018 Nicola Chiarelli, Giulia Carini, Nicoletta Zoppi, Marco Ritelli, Marina Colom
The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers–Danlos syndrome: the impact of proprioception – 2016 Scheper, Rombaut
Cuadernos de Neuropsicología – Número Especial SED – Special Edition on EDS 2016
Dr. Jaime Bravo’s 2012 When To Suspect JHS (aka HMS/hEDS) document
The Lack of Clinical Distinction Between the Hypermobility Type of Ehlers-Danlos Syndrome and the Joint Hypermobility Syndrome (a.k.a. Hypermobility Syndrome) Tinkle, Bird et al American Journal of Medical Genetics Part A 149A(11):2368-70 · November 2009 (Also available as an article on p 17 of Autumn 2010 EDNF Loose Connections )
Cranio-cervical Instability in Patients with Hypermobilty Connective Disorders – 2016 Henderson, Fraser MD Open Access
Ehlers-Danlos Syndrome (EDS), an Hereditary, Frequent and Disabling Disease, Victim of Iatrogenia due to Widespread Ignorance Harmonet 2015
Differences in manifestation of Marfan syndrome, Ehlers-Danlos syndrome, and Loeys-Dietz syndrome 2017 Meester, Verstraeten, Loeys
Ehlers-Danlos Syndrome or Disease? Hamonet et al 2015
Pain Management in Ehlers-Danlos Syndrome – Pradeep Chopra, MD 2015 EDNF pdf
Pain in Ehlers-Danlos Syndrome is Common, Severe and Associated With Functional Impairment Voormens, Knoop et al 2010 JPMS
Fibromyalgia – an unrecognized Ehlers-Danlos Syndrome Hypermobile Type? (in French) 2013
What is HMS/EDS
Ocular Complications of Ehlers-Danlos Syndrome – Dr. Diana Driscoll (Total Eye Health, on complications in the eyes with EDS /HSD)
Vascular Ehles-Danlos Syndrome via The EDS (ER’s assume vEDS until proven fully otherwise!)
Vascular Ehlers-Danlos Syndrome via EDS Network C.A.R.E.S.
Clinical and genetic aspects of Ehlers-Danlos Syndrome, classic type 2010
Joint hypermobility: emerging disease or illness behaviour? Rodney Grahame, MD Clinical Medicine 2013, Vol 13, No 6: s50-s52
Additional Useful Links for those with Chronic Illness (all kinds)
Suggested Medical Workup for Patients Traveling to See an EDS Specialist (via TCAPP)
Cranio-Cervical Instability (CCI) via The Pain Foundation
Slide set on Collagen and Collagen Disorders by Dr. Achi Joshi
Function of Collagens in Energy Metabolism and Metabolic Diseases 2014
Gastrointestinal and Nutritional Issues in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type 2015 Castori et al
Ehlers-Danlos Syndrome in Orthopaedics 2012
EDS and Anesthetics via The Reluctant Contortionist 2015
The Biology of Hernia Formation – Franz, MD 2008
Local Anesthetic Failure in Joint Hypermobility Syndrome 2005 Hakim, Grahame
Clinical study of hereditary disorders of connective tissues in a Chilean population: joint hypermobility syndrome and Vascular Ehlers-Danlos Syndrome 2006 Bravo, Wolff (indicates a relatively high prevalence of HCTDs at up to 35% collectively)
Tips from Kevin Muldowney on PT for Ehlers-Danlos patients
Transcriptome-Wide Expression Profiling in Skin Fibroblasts of Patients with Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome Hypermobility Type Chiareli, Carini et al 2016 PLOS ONE
If You Can’t Connect The Issues, Think Connective Tissues – 2014 EDNF talk by Heidi Collins, MD
Ehlers-Danlos Syndrome Hypermobility Type is Associated with Rheumatic Disease 2016 Rogers, Gui et al
Gastrointestinal and nutritional issues in joint hypermobility syndrome/ehlers–danlos syndrome, hypermobility type 2015, Castori, Morlino et al AJMG
2017 The EDS Learning Conference Info slides and videos from Las Vegas NEW
Collagen and Collagen Disorders via Dr. Achi Joshi
Dislocation/Subluxation Management via The EDS- Jason Parry, Physio, London, England 2017
Ehlers-Danlos syndrome hypermobility type is associated with rheumatic diseases – 2017 Rogers, Gui, Chu et al Scientific Reports
Vascular phenotypes in the non-vascular subtypes of the Ehlers-Danlos syndrome: a systematic review 2017 D’hondt, Van Damme, Malfait
The extracellular matrix glycoprotein tenascin-X regulates peripheral sensory and motor neurones. 2018 Aktar, Peiris, Fikree et al
EDS and False Accusations of Child Abuse 2019 Hamonet, Holick et al
Nationwide population-based cohort study of celiac disease and risk of Ehlers-Danlos syndrome and joint hypermobility syndrome 2016 2016 Laszkowska, Roy, Lebwohl et al
Chronic treatment with a broad-spectrum metalloproteinase inhibitor, doxycycline, prevents the development of spontaneous aortic lesions in a mouse model of vascular Ehlers-Danlos syndrome 2012 Hyun-Jin Tae¹, Shannon Marshall, Jing Zhang, Mingyi Wang, Wilfried Briest, Mark I Talan

EDS Organizations and Physician Websites

The Norris Lab at MUSC (lead researchers chasing hEDS genes since 2020)
Ehlers-Danlos Support UK
Chronic Pain Partners aka EDS Awareness (US) – best for finding/starting support groups. Also hosts regular educational webinars free to all.
The Ehlers-Danlos Society (formerly the EDNF, now international US/UK in scope May 2016)
Center for Ehlers-Danlos Syndrome Alliance
Pretty Ill site by Dr. Diana Driscoll
Hypermobile EDS Site
The Murray Wood Foundation on EDS & MCAD
Dr. Jaime Bravo’s Rheumatology Site in Chile
RCCX and Illness – Dr. Sharon Meglathery’s site on a hypothesis that my underlie hEDS and so much more
SED Medic en France
Active Futures organization UK bespoke physiotherapy and other support and training for hEDS/HSD
Association for Pelvic Organ Prolapse Support

Invisible Disabilities Organization (not EDS specific, but we fall under their umbrella)
The Coalition Against Pediatric Pain (very EDS aware group)

VIDEOS

Eye health and EDS – Dr. James Kundart speaking to Oregon EDS group April 2013
EDS Primer – Could you have Ehlers-Danlos? – Dr. Diana Driscoll 2011
Introduction to EDS for Fibromyalgia Patients – Jan Groh, 2014
Genetic Testing in EDS – Dr. Mitzi Murray’s talk from 2015 ENDF Conference via Chronic Pain Partners Oct 2015
EDS Empower Hour: Special Disability Discussion with Doctors and Lawyers – 2022 Christie Cox
PoTS and Hypermobility Syndrome (hEDS) – Dr. Blair Grubb 2015 EDNF
Autonomic Seizures and Autonomic Epilepsy – Dr. James Riviello via Dysautonomia International 2015
Trailer for 2013 OR EDS Conference – captions aren’t the best. Buy the whole conference video for $35 at http://oreds.org
Update from Josh Milner MD at NIH on study of comorbidity of EDS/MCAD/POTS aka “Familial Tryptasemia” via Dysautonomia International 2015
Kristen Means on Life with EDS YouTube 2011
How Ring Splints Help Stabilize Finger Joints by The Beautiful Ring Splint Company, York UK
POTS or CSF Leak? How to tell… Dr. Ian Carroll Stanford Neurology 2016
~~If You Can’t Connect The Issues, Think Connective Tissues~~ – 2014 EDNF talk by Heidi Collins, MD (This video was made private and no longer available in approximately 2020.)
VIDEO: But You Don’t Look Sick: Living with Chronic Pain (EDS)
It’s Our Time – Awareness Raising video by The EDS 2016
Webinar archives of EDS Awarness aka Chronic Pain Partners
Several 2016 videos on EDS via Improving The Lives of Children Foundation of Canada
Several EDS & POTS & MCAS videos from 2016 via Children’s Hospital of Orange County
The new EDS and HSD nosology video with Dr. Francomano & Lara Bloom 2017
Ross Sisters Solid Potato Salad number on YouTube (exhibit of gross hypermobility)
What stretching actually does to your body, featuring Sofie Dossi by Physics Girl on YouTube 2018
Jan featured on Quax Pod Episode 52 https://youtu.be/yxNpuYCuWso 2019

BIPOC and marginalized stories

Advocate Nthabeleng Ramoeli on her EDS journey and EDS care in Lesotho and more via EDS Awareness January 2023
Kaleena Deshawn on challenges as a person of color with EDS, Fibromyalgia and ME/CFS 2022 via EDS Awareness
Adrienne Ferron on challenges as a woman of color with EDS 2022 via EDS Awareness
How bias and a lack of access to healthcare impacts EDS patients of African descent – Nia Hamm January 2020 via The Ehlers-Danlos Society blog
How a medical student is using TikTok to bridge racial health disparities (not EDS specific) 2022 via WHYY
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.)

EDS and Eye Health

EDS and Eye Health talk by Dr. James Kundart to the OR EDS group 2013
Problems with the eyes in EDS patients Total Eye Care 2019

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

* 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.

Oh TWIST