Other sources of help

Here are some other organisations which you may find useful:

PoTS UK (https://www.potsuk.org/) Providing information and support about postural orthostatic tachycardia syndrome (PoTS) for sufferers, medical professionals, family, and friends

Pain Concern (http://painconcern.org.uk/) Work to improve the lives of people living with pain and those who care for them.

Ehlers-Danlos Support UK (https://www.ehlers-danlos.org/)

Brittle Bone Society (https://brittlebone.org/) supports people with Osteogenesis imperfecta

Stickler syndrome UK (https://stickler.org.uk/) is a non-profit organisation that provides information for families, healthcare and medical professionals affected by or caring for people with Stickler Syndrome.

The Arthritis and Musculoskeletal Alliance (ARMA) (http://arma.uk.net/) is the umbrella body for the arthritis and musculoskeletal community in the UK.

Pain UK (https://painuk.org/) an alliance of charities providing support and help for those living with pain. Pain management, healthcare advice. tips and resources available.

The Ehlers-Danlos Society (https://www.ehlers-danlos.com/) Formerly the EDNF, support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population. They're developing a Global Registry of patients with EDS or HSD

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.

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.
What is the Beighton Score?

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