Hypermobility Syndromes Association

Hypermobility Syndromes Association

The HMSA is the only charity offering both practical support and Information Standards Accredited health and care information to people who have a hypermobility syndrome. or who are involved in the care of someone with any of the hypermobility syndromes, including Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.

The Information Standard is a certification programme for organisations producing evidence-based health and care information for the public. Any organisation achieving the Information Standard has undergone rigorous assessment to check that the information they produce is clear, accurate, balanced, evidence-based, relevant and up-to-date.

This certification gives medical professionals confidence in the reliability of information from our website and publications, helping people with a hypermobility syndrome get the treatment they need.

Run by people affected by a hypermobility syndrome for people with a hypermobility syndrome, a number of the HMSA’s staff and volunteers are also medical professionals in their own right, which enables the charity to offer advice and support to relevant professionals (including social workers, GPs, consultants, physiotherapists, Occupational therapists, psychologists and teachers). The Hypermobility Syndromes Association (HMSA) is therefore one of the few charities, offering support both to people with a medical condition and the professionals treating and supporting them.

  • The HMSA is a dynamic charityproviding 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. ( dedicated professional members area under development)
    • Internet forums for peer support, moderated to ensure they are safe and accurate (some areas are only accessible by members)
    • Free Helpline for support and advice, 7 days a week
    • 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 hypermobility masterclass events offering a chance to socialise with others who understand life with a hypermobility syndrome and improve understanding of hypermobility syndromes and their management**
    • 1:1 advice from trained staff.*
    • Advocacy is offered on a case by case basis. (This is not a guaranteed service as it depends on staff time and also proof of diagnosis via a medical letter.)*

    JHS = Joint Hypermobility Syndrome

    EDS = Ehlers Danlos Syndrome

    HMSs = hypermobility syndromes

    Some may be familiar with using the term HMS (Hypermobility Syndrome) as a diagnosis that describes them being hypermobile and in pain. Here we use the term JHS in its place. Others use the term JHS or EDS-Hypermobility Type to describe their condition. In the section on Hypermobility and illness we aim to explain that there is a spectrum from just being hypermobile with no symptoms to being hypermobile with joint symptoms with or without mild variations of other signs and symptoms (JHS), to being hypermobile with joint and other complex problems (EDS).

    The term HMSs is used here simply as an abbreviation for the words hypermobility syndromes when we are talking about all the disorders associated with hypermobility, and is not used as a diagnostic term in its own right.

Contact Hypermobility Syndromes Association

Our Helpline number is  0845 345 4465.

The Helpline is available during office hours Monday-Friday and has limited access over the weekends. We do have an answering machine so please leave a message. We aim to reply to all messages within 3 working days and will make several attempts to contact you. Please remember that the Helpline staff are usually volunteers who have one of the Hypermobility Syndromes which may delay our response at times.

Forum enquiries should be made using the Forum Contact form.

 

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