Ehlers-Danlos syndromes

The terminology relates to JHS and the Hypermobile variant of Ehlers-Danlos was updated in March 2017.

The following abbreviations will be used:

HSD= Hypermobility Spectrum Disorder (previously sometimes referred to as Joint Hypermobility Sydnrome (JHS) or Hypermobility Syndrome (HMS) )

EDS = Ehlers Danlos Syndrome (variants abbreviated with a prefix lower case letter e.g. hEDS for Hypermobile, or cEDS for Classic)

HDCT = Heritable Disorder of Connective Tissue (or depending on the nature of the article we may also use the layperson term HMSs (hypermobility syndromes) as the same thing).

The term HSD is used where a person is symptomatic from their hypermobility but does not have a diagnosis of one of the Heritable Disorders of Connective Tissue such as EDS or Marfan syndrome.

We advise that clinicians should apply the 2017 international criteria on Hypermobile EDS (hEDS) and only use this term if it applies to their patient.

We use the term HMS as an abbreviation for the words hypermobility syndromes when we are talking about all the disorders that are syndromes associated with hypermobility. It is not a diagnostic term in its own right; it is a descriptor of a group of disorders including EDS and Marfan syndrome. The academic term in this situation is Heritable Disorders of Connective Tissue (HDCT).

What is EDS

An overview of the different types of Ehlers-Danlos syndrome Read more

Classical EDS

Typical features of classical Ehlers-Danlos syndrome (cEDS) Read more

Vascular EDS

An overview of the typical features of vascular Ehlers-Danlos syndrome (vEDS) Read more

Hypermobile EDS

An overview of the diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS). Read more

Video: Overview of new classification of EDS

An overview of the new classification of EDS by Dr Hana Kazkaz Read more

Latest

Online relaxation session

A weekly live online relaxation session for HMSA members, led by Psychotherapist Kim Clayden

RECRUITING: A Qualitative study exploring perceptions and experiences of Exercise, Physical Activity and Sport for Males with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS)

A Qualitative study exploring perceptions and experiences of Exercise, Physical Activity and Sport for Males with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS)

Communicating about hidden disabilities and symptoms (Webinar)

A 1 hour webinar on "Communicating about hidden disabilities and symptoms" with Hannah Ensor, exploring effective ways to improve communication with, and help gain understanding from, family and loved ones (who we may all be spending a LOT more time with for the immediate future!) (HSMA members can email [email protected] for a free ticket, subject to availability)

HMSA Hero Keith Diaper has adapted his latest challenge for Covid compliance....

Our HMSA Hero, Keith Diaper recently had to reluctantly call off his last massive challenge for the summer due to shielding restrictions, but he bounces back fast and has instead converted the challenge, so if you can - by all means join in with his efforts - or if you're able, please donate to his fundraiser.

Response to BSR statement March 4th 2020

We are aware of the BSR statement and have prepared a response detailing our position on the subject.

"New study confirms systemic nature of hypermobility syndromes, that late diagnosis is common and associated with negative health outcomes."

This long awaited and eagerly anticipated paper has been published today on BMJ Open. Authors of this study are Joanne C Demmler, Mark D Atkinson, Emma J Reinhold, Ernest Choy, Ronan A Lyons, Sinead T Brophy.

HMSAware - Marfan syndrome, EDS is not the only 'fruit' of the hypermobility family tree

There's more to connective tissue disorders than EDS - Marfan patients often feel aggrieved that they (and others) are left out of the hypermobility conversation which is largely dominated by Ehlers-Danlos syndrome. #HMSAware

Hypermobility Syndromes Association COVID19 collated resources, regularly updated.

Reliable and credible information on Coronavirus for people with hypermobility related health issues, a collation of solid advice from International, European and UK organisations dealing with associated conditions.

What are hypermobility syndromes?

Hypermobility syndromes is an umbrella term for a number of complex heritable disorders of the connective tissue (HDCTs) which feature among a diverse constellation of symptoms, some hypermobility in some or all of the musculoskeletal system.

HMSAware - HMSAnonQ, FAQ and the big question...

During the 2018 HMSAware campaign we took questions from the public and formulated them into an FAQ, with an Anonymous Question on the Wednesday evening, taking a look at that perennial question of whether or not hypermobility related health problems are rare. It is reproduced below, with an update taking into account more recent UK based research.