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).

Latest

#HMSALiveOT March 2021

Bendy Occupational Therapist Jo Southall can't magic all problems away, but she has some super tips on stripping out some of the tough parts and has a range of ingenious tips to avoid some of the others! Join us at 7pm GMT Thursday 18/3/21
RECRUITING: Voice, swallowing and acid reflux in Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

Voice, swallowing and acid reflux in Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Hannah Williams and Dr Shashi Hirani, City University, University of London The purpose of this research is to explore the frequency and severity of voice difficulties, swallowing difficulties and acid reflux in people with Ehlers-Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD). The study will explore whether there is a relationship between types of EDS/HSD and symptoms in the
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When it doesn’t go to EHCP

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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.
RECRUITING: How Pain-Related Beliefs Affect Our Expectations

RECRUITING: The University of Liverpool is looking for participants who: Have chronic pain OR are pain-free, are over 18 and understand English to take part in an online study.
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 - 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.
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.
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How various hormones interact with hypermobility, including why symptoms may worsen around menstruation and things to consider regarding hormonal contraceptives.
HSD: Symptoms

A short overview of common symptoms of hypermobility spectrum disorder
Victory for Kids and Teens Social Media Volunteer!

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Ehlers-Danlos syndromes

What is EDS

Classical EDS

Vascular EDS

Hypermobile EDS

Video: Overview of new classification of EDS