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 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That said, several of the older papers and links shown below may now be outdated or obsolete, as I haven’t had time to comb through them all and update or annotate their links.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That said, even if they refer to merely outdated labels (e.g. HMS, JHS, BJHS).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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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! Last updated 12/28/21.

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 the Royal College of General Practitioners in London (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 in 2022, 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). (I still don’t personally think it’s really rare, just rarely recognized.)

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 MCAD Resources here Last Updated 1/9/22

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 Dangers of COVID-19 for the EDS/Chiari/Comorbid patient via Chiari Bridges March 2020
The Ehlers-Danlos Syndromes GP Toolkit via the RCGP London, England May 2018
Handy hypermobile Ehlers-Danlos Syndrome Diagnostic checklist for doctors March 2017
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
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
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
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 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
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
All past EDNF and newer EDS Learning Conference slides 2012-present (2018)
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

Pain and Hypermobility Disorders of all kinds (HSD, EDS, etc.)

Pain Management in Patients with Hypermobility Disorders: Frequently Missed Causes of Chronic Pain – Dr. Blustein 2017 via TCAPP
The Physiologic Effects of Pain on the Endocrine System 2013 Tennant, MD
Rhode Island Pain Center – Dr. Pradeep Chopra, EDS pain specialist
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
Chronic pain in hypermobility syndrome and Ehlers-Danlos syndrome (hypermobility type): it is a challenge Shepherd, de Vries et al 2015 J of Pain
EDS and Anesthetics via The Reluctant Contortionist 2015
Local Anesthetic Failure in Joint Hypermobility Syndrome 2005 Hakim, Grahame
Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes 2016 Cazzato, Castori et al
Joint Hypermobility and Joint Hypermobility Syndrome – Alan Pocinki MD 2010 (excellent sort of “cliff notes” to all the issues hypermobility can cause in a body even if the disease name and terminology have changed, the issues have not)
The Princess in the Tower: Healing Resources for CRPS, Fibro and More… (blog)
21 Symptoms Kids With Ehlers-Danlos Syndrome Had That Weren’t “Growing Pains” – 2018 The Mighty
Your Right to Amend Medical Records via Dysautonomia Dispatch 2018
Use of complementary therapies for chronic pain management for patients with reported Ehlers-Danlos syndrome, or Hypermobility Spectrum Disorders 2020 Demes, McNair and Taylor

VIDEOS

Eye health and EDS – Dr. James Kundart speaking to Oregon EDS group April 2014
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
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
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

EDS Organizations and Physician Websites

The Ehlers-Danlos Society (formerly the EDNF, now international US/UK in scope May 2016)
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.
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)

Links to Fibromyalgia

Is there any link between joint hypermobility and mitral valve prolapse in patients with fibromyalgia syndrome? 2016 Kozanoglu, Benladayi et al Rheumatology
Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes 2016 Cazzato, Castori et al
Skin ultrastructural similarities between Fibromyalgia and Ehlers-Danlos syndrome hypermobility type – Hermanns-Le T and Pierard GE (2016)

Lipedema and lymphedema and EDS/HSD

We’re finding Lipedema (aka Lipoedema) to be a fairly common comorbdity / co-occurring condition in the hypermobile community, as well as MCAD community. So I’ve added this section in November 2021.

This short list is blatantly stolen with permission from friend and author of More Than Fat:

Dr. Karen Herbst – http://www.lipomadoc.org/
Lipedema Project – lipedemaproject.org
Fat Disorders – https://www.fatdisorders.org
Lipedema Foundation – https://www.lipedema.org/
Lipoedema Ladies – https://www.lipoedemaladies.com/ (UK)
Lipedema – https://www.lipedema.net/
Lipedema Simplified – http://lipedema-simplified.org/

Additional articles of interest:

Key signaling networks are dysregulated in patients with the adipose tissue disorder, lipedema Nov 2021 Ishaq, Bandara, Morgan et al

Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS? – Jeffrey Lubell via Health Rising Dec 2021

BIPOC and minority stories

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
Please share your story as a BIPOC 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!

EDS and Eye Health

EDS and Eye Health talk by Dr. James Kundart to the OR EDS group 2014
Problems with the eyes in EDS patients Total Eye Care 2019

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!)

The Cusack Family Website – they are finding successful recovery via a polysaccharide protocol they’ve discovered
Allysa Seely – first triathlete to compete with EDS in the 2016 Para Olympics
Ellen Lennox Smith’s EDS Site
Brooklyn Brumfield made a great recovery using stem cell therapy
POTS: A Mysterious Syndrome That Can Turn Your Life Upside Down (and how Wendy recovered from it to a great degree)
Dogtor J’s G.A.R.D. site – the Glutamine and Aspartic Acid Reduction Diet for epilepsy
How I Overcame My Food Sensitivities – an encouraging post from an undiagnosed fellow likely MCAD patient
Twelve Years, A Dozen Diseases, One Sweet Victory – Mary Ruddick’s inspiring story of recovery from EDS, POTS and much more (autoimmune diseases) via diet & detoxing
Physiotherapy (PT) for hEDS and HSD via the EDS UK organization
The Muldowney Physical Therapy Protocol for EDS patients

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:

Natural Whole Foods Vitamins (ascorbic acid is not vitamin C)
Diet and Supplement Guidelines for EDS – Heidi Collins, MD
Magnesium and Ehlers-Danlos Part One – Heidi Collins, MD
Magnesium and Connective Tissue Senni, Foucault-Bertaud et al via John Libbey Eurotext March 2003
Nine types of magnesium explained by Dr. Eddy Betterman
When Magnesium Makes Me Worse – Carolyn Dean, MD ND
[PubMed] A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements – 2005 article on a nutritional approach to EDS
Sandy Simmons Connective Tissue Disorders site – has lots of good nutritional support info for all forms of CTDs (EDS plus)
Little known facts about oxalates and their effects on connective tissues (Sally K Norton)
Your Tendons on Cake 2015 James Crownover, MD (avoid sugar!)
Idiopathic Postrandial Syndrome (often confused with hypgolycemia) vai Wikipedia
Adrenergic Postrandial Syndrome (often confused with hypoglycemia too)
Role of vitamins D, C and E in immunology and inflammation – 2013 Shaik-Dasthaqirisaheb YB, Varvara G, et al
The relationship between disorders of K+ and Mg+ homeostasis 1987 Solomon
Mechanism of Hypokalemia in Magnesium Deficiency 2007 Chou-Long Huang, Elizabeth Kuo JASN
Errors in Potassium Measurement: A Laboratory Perspective for the Clinician 2013 Asirvatham, Moses, Bjornson
Magnesium and potassium. Inter-relationships in cardiac disorders 1986 Wills MR
Low magnesium levels make Vitamin D ineffective – Feb 2018 Science Daily
An introduction to cortisol by Florence Neville, health coach

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

The RCCX Hypothesis (first posted February 2016 by Sharon Meglathery, MD)
Joint Hypermobility: A Red Flag for Gene-Based Chronic Disease Cluster June 2017 McEvoy, M in Holistic Primary Care
Hyper Joint Mobility, EDS, Collagen, Histamin & CIRS: Implications May 2017 McEvoy, M in Metabolic Healing
Ehlers-Danlos Syndrome Caused by Biallelic TNXB Variants in Patients with Congenital Adrenal Hyperplasia Chen, Perritt et al 2016 via Springer
Broadening the Spectrum of Ehlers-Danlos Syndrome in Patients with Congenital Adrenal Hyperplasia Morisette, Chen, Perritt et al 2015
Tenascin-X, Congenital Adrenal Hyperplasia, and the CAH-X Syndrome. 2018 Miller, Merke
High-Throughput Screening for CYP21A1P-TNXA/TNXB Chimeric Genes Responsible for Ehlers-Danlos Syndrome in Patients with Congenital Adrenal Hyperplasia 2019 Qizong Lao, Brittany Brookner, Deborah P Merke 2019

Additional hypotheses on the causes of hEDS (hypermobile type)

Some cases of hypermobile Ehlers-Danlos syndrome may be rooted in mast cell activations syndrome 2021 Afrin, Lawrence, B MD
MUSC researchers announce gene mutation study linked to EDS 2021

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

What is Craniocervical Instability? via the Pain Foundation
Overview: Craniocervical Instability and Related Disorders – Chiari Bridges
Tethered Cord Syndrome
How Cranio-cervical misalignment affects fluid flow – Dr. Rosa DC 2016
Ehlers-Danlos, POTS, and Occult Cerbrospinal Fluid Leak: A Case Report 2017 Aggarwal Stanford
Chiari 0 (occult Chiari) via Bobby Jones CSF (MD) blog
Chiari 0 malformation with syringomyelia syringobulbia and syrinx cavity in pons 2016 Zhou, Wang, Li et al
Tethered Cord Syndrome in Ehlers-Danlos – Diagnostic Criteria, Surgical Indication and Filum Pathology – Klinge, P. MD 2015 Conference slides
How common is normal CSF pressure in spontaneious intracranial hypotension? (CSF leaks) 2015
Hypermobility and Headache – Dr. Vernon Rowe, 2018
Periventricular heterotopia: New Insights into Ehlers-Danlos Syndrome 2005
Ehlers-Danlos, POTS and a Headache Cured – via American Academy of Pain Medicine
Cervical medullary syndrome secondary to craniocervical instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders: 5-year follow-up after craniocervical reduction, fusion, and stabilization 2019 Henderson, Francomano, Tuchman et al
Signs and Symptoms of Atlas Subluxation Complex 2019 Grayson Blom, DC
The Anatomy of the Atlas Subluxation by UpCSpine 2019
Undiagnosed Atlas Subluxation in Patient with Pain and Poor Myofascial Function 2019 Hartz, Sauer, Howe et al MD
[VIDEO] Dr. Mandell’s Atlas technique – the Miracle Bone That Can Help Spinal Pain, Muscles, Body Organs – YouTube 2017
A Case Study of Severe CCJ Instability and a PICL Procedure 2019 Chris Centeno, MD
Learning Patience: Eighteen Months of Spinal CSF Leak Recovery (great insight into life post blood patching for one patient)
Head, Neck, Brain, Spine – learn how to read MRIs and CTs of the head and neck
A cautionary thread on chriopractic care for anyone, but especially the hypermobile community via @TheDudeDO 2021 (JG note: yes, SOME of us can benefit from SOME careful chiropractic care, some even a lot, BUT… in the wrong hands, we can be seriously harmed or even killed so… choose carefully, preferably one who truly understands hypermobility.)

Anesthesia in hypermobility and EDS

EDS and Anesthetics via The Reluctant Contortionist 2015
Local Anesthetic Failure in Joint Hypermobility Syndrome 2005 Hakim, Grahame
Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s) 2014 Thomas Wiesmann, Marco Castori, […], and Hinnerk Wulf

Additional Misc Links

Ehlers-Danlos Treatment Report (tracks latest research, studies and treatment articles for all forms of EDS)
National Keratoconus Foundation
Main medical characteristics of Loeys-Dietz syndrome
About Mitochondrial Disease via Mito Action
Does muscle strength change over time in patients with hypermobile Ehlers‐Danlos syndrome/ Hypermobility Spectrum Disorder? An 8‐year follow‐up study 2020 Coussens, Calder, Lapauw et al (inc Malfait)
Celeste Cooper’s Site – A savvy RN with fibromyalgia
The Spoon Theory (of energy management) by Christine Miserandino
Handle With Care: Why Doctors Don’t Like the EDS Diagnosis Oct 2017 Jenrose
The collαgen III fibril has a “flexi-rod” structure of flexible sequences interspersed with rigid bioactive domains including two with hemostatic roles 2017 Parkin, San Antonio, Savage et al
Interview with Dr. Claude Hamonet by the L’yonne Republicaine 2019
How to Get on Social Security Disability for Ehlers Danlos Syndrome via Sleepy Girl Guide
Study Finds 40% False Positives in Direct-To-Consumer Genetic Tests – 2018 Ryan Black
[PubMed] A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements – 2005 article on a nutritional approach to EDS
Down with the Pastryarchy – a site to support those with Celiac Disease and Gluten Sensitivity
Shoulder Support Tricks – from a patient blog
A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome 2015
Pseudo-psychiatric symptoms in EDS patients via Dr. Pocinki EDNF Conf 2013
Leaky Gut, What It Is and What To Do About It (a common EDS comorbidity) Dr. Doni
Job Accommodation Network new EDS guidelines for the workplace
Dr. Nancy Mullan’s articles on MTHFR and the Methylation cycle
Children with Ehlers-Danlos Syndrome and Airway Dysfunction ACR 2011
Problems with the eyes in EDS patients Total Eye Care 2019
A study of migraine characteristics in hypermobility syndrome a.k.a. Ehlers-Danlos Syndrome, hypermobility type Puledda, Vigano et al Neurological Sciences 36(8) · March 2015
Tenascin-X, Collagen and Ehlers-Danlos Syndrome 2013
Medical Assistance Ultimate Directory by 3WithADHD blog (not EDS specific but still helpful!)
Synthesis and secretion of collagen by cells of connective tissue, bone and dentin 1989
The Empowered Patient: Ways You Can Get The Most From Your Medical Team EDNF 2014 Learning Conference presentation (Butler-Pierce, Weber)
Why You Must Not Stretch Hypermobile Clients – The PTDC
Joint mobility and Ehlers-Danlos syndrome (EDS), new data based on 232 cases, Harmonet et al France 2015 (shows more arguments against using Beighton 9 pt scale)
32 Ways to Stimulate Your Vagus Nerve And All You Need To Know About It via LifeHacks (affects much more than you might expect, check it out if haven’t)
Dermal ultrastructure in low Beighton score members of 17 families with hypermobile-type Ehlers-Danlos syndrome. Hermanns-Lê T, et al. J Biomed Biotechnol. 2012.
The association between Ehlers-Danlos syndrome – hypermobility type and gastrointestinal symptoms in university students: a cross-sectional study 2016 Fikree A et al.
NIH Scientists uncovering genetic explanation for frustrating syndrome Oct 2016
One Gene Mutation Links Three Mysterious, Debilitating Diseases 2016 (Mental Floss)
NIH FAQ’s page about the Familial Tryptasemia study results (directly above) 2016
Miss Diagnoses – a funny blog by a chronically ill woman who has many common EDS comorbidities (and whom I suspect!)
Ehlers-Danlos Syndrome: More Than Just Stretchy Skin or Bendy Joints US News Wellness November 2016
Complex Decongestive Physiotherapy (CDPT) – for lipo-lymphedema (google lipedema and or lipoedema – a common comorbidity we’re finding)
Understanding Lipedema – a fat storage disorder, via Dr. David Amron, liposurgeon
When it’s not just fat: discovering lipedema in women via NPR 2016
Hall of Care – resource site for lipedema and other bariatric and mobility impaired patients
Asthma and airways collapse in two heritable disorders of connective tissue – 2007 Morgan, Pearson et al
Cystic kidneys associated with connective tissue disorders – 1997 Am J Med Gen
Periodic Paralysis – a Journey
Foot type analysis based on electronic pedobarography data in individuals with joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type during upright standing. 2014 – Cimolin, Galli et al (IOW: yes, you may have really high arches with EDS!)
Ehlers-Danlos is associated with acute pancreatitis 1989 Sarra-Carbonell, Jiminez
Recent studies of genetic dysfunction in pelvic organ prolapse: the role of collagen defects 2014 Lim, Khoo, Wong et al
Pelvic organ prolapse and collagen-associated disorders 2012 Lammers, Lince et al
Joint hypermobility, obstetrical outcomes, and pelvic floor disorders 2013 PubMed Leise R. Knoepp, Kelly C. McDermott, […], and Victoria L. Handa
Brain injury unmasking Ehlers-Danlos syndromes after trauma: the fiber print 2016 Hamonet, Fredy, LeFevre et al
People Who Are Double-Jointed Are More Likely to Be Anxious 2015 – Scientific American
Targeted Deletion of Collagen V in Tendons and Ligaments Results in a Classic Ehlers-Danlos Syndrome Joint Phenotype 2015 Mei Sun, Brianne K. Connizzo, […], and David E. Birk
Meet Your Insterstitium, a Newfound “Organ” March 2018 Scientific American
A story of life with Kyphoscoliotic EDS (EDS Type VI)
Holy Shit I’m Sick! A patient blog in German by Karina Sturm
Fat Zebra Theory by Sarah P. Diaz, Ph D. (fellow patient also)
Taming The Beast – on life with CRPS and more by the late Lili Wilde

* 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