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

How do you get through mundane tasks? By Sophie Harvey

Help me change the lives of hypermobile people!

I am fundraising to help provide resources and support for people with hypermobility syndromes, their families, and medical professionals.

Social Media Support Team

2 roles: scheduling posts in Buffer, and creating images in CANVA.

250 Mile run during 2020

I am going to run a total distance of 250 miles before the end of 2020, to provide support & raise awareness of Ehlers-Danlos & other Hypermobility Syndromes.

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.