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. 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That said, several of the older papers and links below may now be outdated or obsolete, as I haven’t had time to comb through them all and update or annotate their links.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of salt accordingly and keep their historical value in mind and kindly notify me of any completely broken or badly outdated ones here.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!
But! Exciting news – my friends at EDS Awareness have just launched the first ever online source for doctors to obtain Continuing Medical Education units or “CMEs” on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders and related issues here now! (2017)
And… as of 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 got to help craft it!) It is also freely available to doctors worldwide, so please do share far and wide!
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).
And, if you feel able and willing, I’d deeply appreciate your support at any level on Patreon TY: 
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!
- 2017 EDS International Classification via The Ehlers-Danlos Society March 2017 (this includes all 18 papers in the Am J of Med Genetics for now)
- 2017 EDS International Classification via The EDS for non-experts (lay person’s papers) 2018
- The Ehlers-Danlos Syndromes GP Toolkit via the RCGP London, England May 2018
- FREE Ehlers-Danlos Syndromes Physician CME Education online via EDS Awareness 2017
- 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
- Handy hypermobile Ehlers-Danlos Syndrome Diagnostic checklist for doctors March 2017
- New 14th type of rare (AR) EDS discovered 2018: AEBP1
- 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 When To Suspect JHS (aka HMS/HEDS) document 2012
- 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 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
- 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
- The Role of Collagen in the Eye – via CEDA (Canada EDS group)
- 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
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
- 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
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)
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
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)
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
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 Connective Tissue Senni, Foucault-Bertoud et al via John Libbey Eurotext March 2003
- Nine types of magnesium explained by Dr. Eddy Betterman
- [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)
- 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
- 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
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
Links on Cranio-cervical instability, Chiari, Tethered cord and related issues
- What is Craniocervical Instability? via the Pain Foundation
- 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
- 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
- Periventricular heterotopia: New Insights into Ehlers-Danlos Syndrome 2005
- Ehlers-Danlos, POTS and a Headache Cured – via American Academy of Pain Medicine
Additional Misc Links
- National Keratoconus Foundation
- Main medical characteristics of Loeys-Dietz syndrome
- About Mitochondrial Disease via Mito Action
- 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
- 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
- Ehlers-Danlos Syndrome: The Role of Collagen in the Eye via EDNF
- Dr Diana Driscoll Interview on POTS/MCAS and more 2016
- A study of migraine characteristics in hypermobility syndrome a.k.a. Ehlers-Danlos Syndrome, hypermobility type Puledda, Vigano et al
- 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
- 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
- Meet Your Insterstitium, a Newfound “Organ” March 2018 Scientific American
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A precious spoon!