Video: Swallowing and voice – Angela Hunter, EDS UK

A presentation on swallowing and voice, by Angela Hunter from EDS UK

This presentation is from the Management and Wellbeing conference 2017, which was run jointly by EDS UK and the HMSA.

Latest

Giving it up for the HMSA

Fancy giving something up for October?
RECRUITING:: Young adults’ experiences of seeking information about chronic pain using the internet and social media
RECRUITING: Investigating the Use of Wearable Technology to Monitor Postural Tachycardia Syndrome

This study is currently recruiting for a survey and a series of follow up interviews about opinions of and personal experiences with wearable technology.
RECRUITING: Does psychological flexibility moderate the efficacy of activity pacing in chronic pain?

A study into activity pacing for people over 16 and living with chronic or persistent pain.

Keeping Cool for the Summer

It's THAT time of year again. The days are getting longer and warmer again, pandemic or not. Staying on top of heat-related symptoms from the outset is an important part of self-management. Jo, our in house Occupational Therapist recorded these tips last year and they're still good!
HMSAware - Getting physical when fully flopped HMSActive

A fully flopped Hannah gets her wriggle on, and an #HMSActive series of videos from our Exercise and Rehab adviser Catherine, there's almost always something you can do, however small - but keep moving #HMSAware
Living Well with an HMS

A presentation by Hannah Ensor on living well with a hypermobility syndrome, as part of an HMSA masterclass.
Video: Overview of new classification of EDS

An overview of the new classification of EDS by Dr Hana Kazkaz
Video: Physiotherapy management of HSDs and hEDS – Dr Jane Simmonds

Dr Jane Simmonds talks about Physiotherapy management of HSDs and hEDS.
Video: Occupational therapy by Jo Southall

A presentation on the role of occupational therapy in hypermobility syndromes by Jo Southall (OT)
Video: Mindfulness – Dr Philip Bull

A presentation on mindfulness by Dr Philip Bull.
Video: Why nutrition is important, by Lisa Jamieson, Wingate Institute

A presentation on why nutrition is important, by Lisa Jamieson, Wingate Institute.
Video: Living with Mast Cell Action by Gawain Paling

A presentation on living with mast cell action disorder by Gawain Paling from Mast Cell Action
Video: The role of primary care

A presentation by Dr Emma Reinhold on the role of primary care in managing hypermobility sydromes.

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.
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.
"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.
HSD: Symptoms

A short overview of common symptoms of hypermobility spectrum disorder
HSD: Diagnostic Criteria

The diagnostic criteria for hypermobility spectrum disorder (HSD)
Hormones and Hypermobility

How various hormones interact with hypermobility, including why symptoms may worsen around menstruation and things to consider regarding hormonal contraceptives.
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.
What is the Beighton Score?

A brief summary of the beighton scale, it's uses and limitations.