Education • Diagnosis • Solutions
In February of 2016, EDS Wellness was founded after several years of conducting community “needs assessments” to determine how to best help the EDS community by filling in the gaps of resources and information that were not a focus of other organizations. Every EDS organization has a niche, and each of us is working various projects or research efforts that make a difference in our community. One project or organization isn’t necessarily more valuable or important than others. As such, EDS Wellness was founded on the premises of promoting health education, public health initiatives and research, integrative healthcare, and wellness strategies for those living well hypermobility syndromes (recently renamed “Hypermobility Spectrum Disorders (HSD)” – see below), such as Ehlers-Danlos syndromes (EDS) and their comorbid conditions. EDS Wellness has touched the lives of thousands of patients across the hypermobility disorders spectrum through numerous projects. There is still work to be done! Patients who fall anywhere within the Hypermobility Spectrum Disorders continuum, and those with Ehlers-Danlos syndromes, such as Hypermobile EDS (hEDS) continue to suffer due to misinformation, medical mistakes, and from a general lack of awareness of the complexities of these multisystemic disorders.
In response to the medical articles published as “early previews” in anticipation of the updated Ehlers-Danlos syndromes nosology (for the first time since 1997) that will be published on March 15th, 2017 by the AJMG (American Journal of Medical Genetics), we felt that it was critical to reiterate, to our community as a whole, the importance of working together. The highly anticipated updated EDS Nosology has been a huge initiative supported by The Ehlers-Danlos Society and Ehlers-Danlos UK. The main focus of this incredible project is to ensure that all patients, including those who fall under the Hypermobility Spectrum Disorders (HSD) category, and those who meet the updated diagnostic criteria for Ehlers-Danlos syndromes, including Hypermobile EDS (hEDS ) and Classical EDS (cEDS), receive the proper care and resources that are critical for their overall health and wellness, because “both can be equal in severity, but more importantly, both need similar management, validation and care.”
A large component of EDS Wellness’ mission is to collaborate with other organizations and healthcare practitioners on various projects associated with Hypermobility Spectrum Disorders, such as Ehlers-Danlos syndromes (EDS) and their related conditions. We also aim to provide information and resources for those living with EDS and the medical professionals who care for them. EDS Wellness focuses on helping patients live well while living with EDS and its comorbid health conditions. Most importantly, we support all EDS and public health organizations. We aim to work together through collaborative initiatives, versus judge or compete.
Below is a quote shared from The Ehlers-Danlos Society’s Facebook page in response to the soon-to-be-released 2017 EDS Classification, including links where you can read and learn more. Additionally, information on hypermobility syndromes (now Hypermobility Spectrum Disorders) and the mission of EDS Wellness are also included below. Please note — all previously written articles such as ‘What is Ehlers-Danlos syndrome?’, ‘Joint Hypermobility, Hypermobility Syndromes and Ehlers-Danlos syndrome – Hypermobility Type‘, and other relevant information contained on EDS Wellness’ website will be updated as needed once the 2017 EDS Classification is published.
Finally, we are incredibly grateful to The Ehlers-Danlos Society and for the work that has been done to increase proper diagnosis, quality of care, and improve patient outcomes for all patients with Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders.
We are #Stronger2Gether.
Quote from post shared on The Ehlers-Danlos Society’s Facebook page:
“This is an exciting time in the history of the Ehlers-Danlos syndromes.
On March 15th 2017, the AJMG (American Journal of Medical Genetics) will be publishing the internationally agreed upon 2017 EDS Classification, for the first time since 1997.
We would very much like to share all the work the International Consortium have done with you straight away; however, due to be publication agreements with the AJMG, our release of the information is embargoed until 15th March, though the Journal is in the process of putting the papers online as soon as they are ready. They will then be freely accessible on The Ehlers-Danlos Society website.
The Ehlers-Danlos Society is aware that some are concerned about what the new criteria will mean to them, hence, we are publishing this support document to help with some of the questions you may have. We would like to reassure you all that we are committed to ensuring that insurance companies, benefit providers and healthcare professionals are made aware of the changes, and that with either diagnosis, the recommended management is offered and pathways are there to ensure that patients are treated in the way they deserve.
The Ehlers-Danlos Society would like to reiterate that we are here to support and provide information to all of our community, no matter what diagnosis they have. We are committed to serving those affected by EDS and HSD as we have before.
We are here to answer any questions you may have – please send them to: [email protected]”
Original Post – https://www.facebook.com/ehlers.danlos/?fref=ts
To read the full Q&A about the new 2017 EDS Classification, please visit http://ehlers-danlos.com/wp-content/uploads/QandA-2.pdf
A few of the articles that were released as “early preview” and will be contained in the American Journal of Medical Genetics (AJMG) edition published on March 15th, 2017:
- ‘A framework for the classification of joint hypermobility and related conditions’ – http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31539/abstract
- ‘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/abstract;jsessionid=B4699A4D096F6AC47BB5FC88AA18C732.f02t04
About Hypermobility Syndromes:
Please note – the information and verbiage used below is based on previous diagnostic criteria and medical information, and may need to be updated information once 2017 EDS Classification is released.
The exact cause(s) of joint hypermobility is unknown. “Loose joints” are believed to be caused by various mutations to one or more of the components that help build our connective tissues. Research suggests that both genetic and epigenetic factors play a role in the presentation and severity of symptoms associated with joint hypermobility. In some individuals, joint hypermobility is an indication of a type of hypermobility syndrome, such as Ehlers-Danlos syndrome – hypermobility type (EDS-HT). Hypermobility syndromes are classified as heritable connective tissue disorders or connective tissue diseases.
There are several types of hypermobility syndromes. Ehlers-Danlos syndrome (EDS) is a hypermobility syndrome. Ehlers-Danlos syndrome – Hypermobility Type, is one of six types of EDS. EDS is a group of heritable connective tissue disorders caused by mutations to either the structure or function of collagen. While researchers are still searching to understand the full complexities of EDS, it is certain that most forms of EDS can cause a broad spectrum of multisystemic dysfunction. Additionally, some EDS researchers speculate that Ehlers-Danlos syndrome – Hypermobility Type may be the most prevalent connective tissue disorder in the world.
‘Experts estimate that up to 10% of the general population may have some degree of hypermobility, with women affected about three times more often than men. Most hypermobile people do not develop any problems from their loose joints, but some suffer chronic pain and other symptoms. Those who do experience chronic joint pain and other symptoms related to their hypermobility or to the looseness of other tissues that often accompanies hypermobility have a condition called joint hypermobility syndrome (JHS).’
(Pocinki A – http://www.dynakids.org/Documents/hypermobility.pdf)
There is currently no cure for hypermobility spectrum disorders or Ehlers-Danlos syndromes. Early detection and proper treatment can help patients lead healthy, active, and fulfilling lives. Obtaining a diagnosis can be difficult. Hypermobility syndromes are often multisystemic and can cause a wide variety of complications throughout all body systems. Patients bounce from doctor to doctor, searching for relief from their many symptoms. Common co-morbidities of hypermobility syndromes include Chronic Fatigue Syndrome, Gastroparesis, Dysautonomia, and Mast Cell Activation Syndrome. EDS Wellness strives to educate doctors on the proper diagnosis and treatment of hypermobility disorders and their co-morbidities.
Read the full article, by going to ‘Joint Hypermobility, Hypermobility Syndromes and Ehlers-Danlos syndrome – Hypermobility Type‘
To learn more about Ehlers-Danlos syndromes, please go to ‘What is Ehlers-Danlos syndrome (EDS)?’
About EDS Wellness:
EDS Wellness, Inc. is a 501(c)(3) non-profit organization promoting health education, integrative healthcare, and wellness strategies for living well hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), other connective tissue diseases, and related comorbidities, through print and digital media resources and materials, seminars, webinars, conferences, health coaching, and patient advocacy,
EDS Wellness provides education on various movement, nutrition, and mind-body therapies by collaborating with healthcare practitioners and like-minded organizations, to improve the quality of life and overall well-being of individuals living with chronic, complex, and multisystemic illnesses.