What a week! And we are still going strong! The EDS Society gave a fantastic webinar on Wednesday, and I helped lead a Q&A session in the EDS Life Hacks Facebook Group. My husband even helped me walk through the new hEDS (Hypermobile EDS) criteria to see if where I fall under the new criteria. Below is my post that I shared on the EDS Wellness Facebook page the other day. Helpful Resources and Links for the 2017 Newly Updated Diagnostic Criteria are listed below.
All articles, papers and entire supplement is available for download and free. All has been published open access.
There are new types of Ehlers-Danlos syndromes (EDS) that have been identified, in addition to adding the broader spectrum of Hypermobility Spectrum Disorders for those who have hypermobility to some degree, but not meet the criteria for a type of EDS. An important point for people to understand is that there are acquired and heritable causes of joint hypermobility. The presentation of joint hypermobility does not always indicate a type of EDS — it could be HSD, another connective tissue disorder, or another condition associated with hypermobility. The good news is that we now have the new classifications under Hypermobility Spectrum Disorders (HSD). All conditions should be treated equally, with the same seriousness and proper access to integrative therapies — one is not less or more severe than the other. Joint Hypermobility is often far more than “just loose joints.”
This is a huge change for the entire medical field. All specialties should read because all are encouraged to become familiar with the new diagnostic criteria so patients don’t have to wait years for a proper diagnosis. All specialties have the ability to help properly diagnosis.
“In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time, management and care guidelines have also been produced for the co- morbidities that can occur within EDS and HSDs.
As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed.”
Source: The Ehlers-Danlos Society – http://ehlers-danlos.com/2017-eds- international-classification/#article
EDS Wellness’ post on Facebook post from Wednesday, March 15th, 2017:
“Just remember – it’s all good. It’s all good. The new diagnostic criteria is a great thing. And change is good – no matter how long or short, hard or easy the path it leads us down is.
Call me the eternal optimist, but I don’t like to live in fear, speculation or negativity. It makes things worse all around and makes us feel worse – that’s a scientific fact. We can’t worry about the “what if’s” or “maybe’s” or “will happen’s” because it “happened before” or “always happens.”
As a community, we can either embrace the new criteria and “be the change we want to see in the world” as Lara Bloom stated, or we can let our fears and negativity (or any negativity around us), propel our collective “EDS Spiral” by jumping in on any negativity and or conspiracy theory bandwagon. EDS Wellness will not choose the latter. Never have and never will.
The statements above do not mean that we are not entitled or in the right of expressing our concerns, our fears, or feeling a bit apprehensive about change — it means quite the opposite. What matters is what we do with those concerns, fears, and apprehensions. If we allow them to spiral downhill and out of control – nothing.good.ever.happens. And forget trying to find providers to partner with us in our healthcare – especially integrative healthcare. Right or wrong, we have to work with the system we have and current beliefs, to effectively educate and make constructive progress towards change. Period.
EDS Wellness does not solely stand for “Ehlers-Danlos syndromes,” it means EDUCATION · DIAGNOSIS · SOLUTIONS.
The EDS Society did a great job of rolling out the new criteria, and of the entire 2017 EDS Diagnostic Criteria Project — it’s been tireless effort all around and they should be applauded. I’m excited and ready. I hope you join with EDS Wellness, The EDS Society, and all other organizations, as we work to decrease time to proper diagnosis, improve the quality of patient care, and improve patient outcomes.
Simply, we are #Stronger2Gether.
Key points from The EDS Society:
“*The publication will be shared on our website as soon as it is available from the American Journal of Medical Genetics.
*A layperson’s version will be published by (The Ehlers-Danlos Society/The International Consortium) within the next couple of weeks. It is our aim that this version will then be translated into several different languages. https://m.facebook.com/ehlers.danlos/photos/a.10151107192055336.486407.294028895 335/10154918232490336/?type=3
EDS Criteria Q&A – http://ehlers-danlos.com/wp-content/uploads/QandA-2.pdf
EDS Types New – http://ehlers-danlos.com/eds-types-new/
Hypermobile EDS – The diagnosis of hypermobile EDS (hEDS) remains clinical; there is no molecular, genetic cause yet identified, so there is no test available for almost all with hEDS.
There is a clinical spectrum ranging from asymptomatic joint hypermobility, through “non-syndromic” hypermobility with secondary manifestations, to hEDS (see the page “Hypermobility Spectrum Disorders” [link coming soon] or “A Framework for the Classification of Joint Hypermobility and Related Conditions” by Castori et al. [link coming soon]).
A diagnosis of hEDS should be assigned only in those who meet all of the criteria, which should help research efforts to discover the underlying genetic cause(s) which, in turn, may help clinical management. As this is a clinical diagnosis, it’s important to be relatively confident that the diagnosis is not instead one of the many other disorders of connective tissue. Hypermobile EDS is inherited in the autosomal dominant pattern.
The clinical diagnosis of hEDS needs the simultaneous presence of criteria 1 and 2 and 3. This is a complex set of criteria, and there is much more detail than presented in this overview; please see the page for hypermobile EDS.
Generalized joint hypermobility (GJH); andTwo or more of the following features must be present (A & B, A & C, B & C, or A & B & C):
Feature A—systemic manifestations of a more generalized connective tissue disorder (a total of five out of twelve must be present)
Feature B—positive family history, with one or more first-degree relatives independently meeting the current diagnostic criteria for hEDS
Feature C—musculoskeletal complications (must have at least one of three); and
All these prerequisites must be met: absence of unusual skin fragility, exclusion of other heritable and acquired connective tissue disorders including autoimmune rheumatologic conditions, and exclusion of alternative diagnoses that may also include joint hypermobility by means of hypotonia and/or connective tissue laxity.
There is a range of conditions which can accompany hEDS, although there is not enough data for them to become diagnostic criteria. While they’re associated with hEDS, they’re not proven to be the result of hEDS and they’re not specific enough to be criteria for diagnosis. Some of these include sleep disturbance, fatigue, postural orthostatic tachycardia, functional gastrointestinal disorders, dysautonomia, anxiety, and depression. These conditions may be more debilitating the joint symptoms; they often impair daily life, and they should be considered and treated.”
For more detailed information, please visit the hEDS page – http://ehlers-danlos.com/eds- types-new/#Hypermobile-EDS
About Hypermobility Spectrum Disorders (HSD) – http://ehlers-danlos.com/what-is-hsd/
EDS Wellness’ Private Physician/Healthcare Provider Forum – The Global Alliance for Hypermobility Spectrum Disorders Providers (GAHSDP) (Available through yearly professional membership only. Member login and password are provided once registered to protect the privacy of each member. If interested in joining, please email firstname.lastname@example.org)
The EDS Society’s Webinar recording – https://youtu.be/3iw4uJeAKj8
The EDS Society’s Press Conference recording – https://www.facebook.com/ehlers.danlos/videos/10154921024930336/
2017 International EDS Classification Information – http://ehlers- danlos.com/2017-eds-international- classification/
‘American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Special Issue: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers- Danlos Syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc (all articles published in supplement are listed individually with links below)
EDS Types – http://ehlers- danlos.com/eds-types/
hEDS vs. HSD – What is the difference? – http://ehlers-danlos.com/wp-content/uploads/hEDSvHSD.pdf
Assessing Joint Hypermobility – http://ehlers-danlos.com/assessing-joint- hypermobility/
EDS Diagnostics 2017 – http://ehlers-danlos.com/eds-diagnostics/
Hypermobile EDS Criteria broken down on Imgur – http://imgur.com/a/hBCFv
‘The international consortium on the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31547/full
‘The 2017 international classification of the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552/full
‘Ehlers–Danlos syndrome, classical type’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31547/full
‘Diagnosis, natural history, and management in vascular Ehlers–Danlos syndrome’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31553/full
‘Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31538/full
‘The Ehlers–Danlos syndromes, rare types’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31550/full
‘Measurement properties of clinical assessment methods for classifying generalized joint hypermobility—A systematic review’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31540/full
‘A Framework for the Classification of Joint Hypermobility and Related Conditions’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31540/full
‘A framework for the classification of joint hypermobility and related conditions’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31539/full
‘The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers-Danlos syndrome’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31545/epdf
‘Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31543/epdf
‘Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31542/full
‘Gastrointestinal involvement in the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31546/full
‘Orthopedic management of the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31551/full
‘Neurological and spinal manifestations of the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31549/full
‘Pain management in the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31554/full
‘Oral and mandibular manifestations in the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31541/full
‘Mast cell disorders in Ehlers–Danlos syndrome’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31555/full
‘Psychiatric and psychological aspects in the Ehlers–Danlos syndromes’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31544/full