Research

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. Read more

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. Read more

CLOSED: Have you travelled for Cranial/Spinal Surgery outside the UK?

CLOSED: EDS/HSD UK residents who've had spinal/cranial surgery outside the UK. Read more

CLOSED: EDS Maternity Staff Survey

This study is open to people caring for childbearing people with an hEDS or HSD diagnosis. Midwives, Doctors, Obstetricians, Sonographers, Gynaecologists, Physiotherapists and anyone else providing medical care to people during or after pregnancy is eligible. Read more

ON HOLD (Covid19) - Children 5-11 with hypermobility syndromes (Billings)

This study is in hold due to the Coronavirus Crisis. Recruitment will reopen in 2021 inviting Primary School children aged 5-11 years to tell me what it is like living with a hypermobile Ehlers Danlos Syndrome (hEDS) or generalised Hypermobility Spectrum Disorder (gHSD). I also want to talk to their parent /guardian to learn what it is like looking after a child with hEDS or gHSD diagnosis. Read more

CLOSED: 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)

THIS STUDY IS NOW CLOSED 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) Read more

RECRUITING: Spider Study (Adolescents)

Impact of Hypermobility Questionnaire for Adolescents. Ages 13-18 Read more

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.