Support and Advice

Support and Advice for Patients

The HMSA is a dynamic charity providing a network of support groups throughout the UK. All our Group Leaders are trained and have clear DBSs (previously called a Criminal Records Bureau check). The HMSA is proud that our groups are recommended by many hospitals and individual professionals because of our positive ethos and the dedication and professionalism of our Group Leaders.

IS accredited website and literature, including a bi-annual journal.
Free Helpline for support and advice, 5 half days a week with additional answerphone service.
Local support groups, run by trained volunteers*
Locally run Facebook groups* – secure places to ask questions and gain valuable peer support, moderated by trained volunteers.
Residential conferences and HMSA Hypermobility Masterclass events and workshops, offering a chance to improve understanding of hypermobility syndromes and their management as well socialise with others who understand life with a hypermobility syndrome.**
1:1 advice from trained staff.*

Support and Advice for Children and Young people

In addition to the general patient support and advice, we tailor a number of things specifically to a younger audience.

Tailored information for children and their parents to help families who often just don’t know where to turn.
Specific ‘Kids and teens’ area of the website – with information at a level which children can easily understand, and schools can also find useful.
‘Youth Journalist’ role – where each year a teenager is selected to write for the HMSA Journal and website, building their confidence and communication skills.
Sections of the HMSA Journal specifically aimed at children and teenagers
HMSA Hypermobility Masterclasses and residential conferences have separate programs for children - encouraging good management and helping them address any concerns they have about their condition **
Educational Support Facebook group (run by nurses, OTs, teachers, physios etc) for parents to get advice on accessing the support available to their child.*

Support and Advice for Professionals

The Kent Model - providing a sample process to follow to help improve local service provision.
Training courses and seminars on hypermobility syndromes and their recognition and treatment for medical professionals.
Access to advice from qualified medical, health and social care professionals who work for, or with, the HMSA. †
Quarterly professional-only e-newsletter. (Professionals can submit information for the HMSA to share amongst other professionals, such as study days, conferences or research studies.) †
Assistance with recruitment for research projects, access to non-identifying patient data, dissemination and the option of the HMSA being the ‘patient partner’. †

*denotes a members only benefits

**priority given to members

† denotes professional membership benefits

Latest

RECRUITING: Exploring the knowledge, assessment and management of symptomatic hypermobility in adults among allied health professionals in UK. A national survey using the Modified HHQ

Recruiting Allied Health Professionals - This is not a patient survey, please do not apply unless you're in the target group of professionals working with adults with hypermobility syndromes.
RECRUITING: The Lived Experience of Joint Hypermobility Syndrome in Dancers: A Phenomenological Study

18+, JHS in competitive/professional dancers.
Recruiting: The hypermobile voice

Survey based investigation of voice in people with symptomatic hypermobility.
RECRUITING: Obstetric and Gynecologic Experiences of Women with Ehlers Danlos Syndrome

Survey study from the University of Toronto for people with Gynaecological or Obstetric experiences who have EDS.

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.
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.
Hormones and Hypermobility

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
HSD: Diagnostic Criteria

The diagnostic criteria for hypermobility spectrum disorder (HSD)
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.