The History of the HMSA

The Hypermobility Syndromes Association (HMSA) was created in 1992 by patients with what was then called hypermobility syndrome or joint hypermobility syndrome.Globally well-known and respected medical professionals supported and worked closely with the charity. The charity was run by volunteers, who provided a helpline service, membership scheme, residential weekends, as well as a very successful forum and website. The passion and drive of the volunteers enabled the charity to grow rapidly.

In 2008 the HMSA adopted positive self-management  model for  its core work. The charity started working more closely with the few services in the UK that were available to meet the needs of people with a hypermobility syndrome. Working with the professionals in these services allowed good relationships to be fostered and to identify the educational needs of healthcare professionals in general.  It also  highlighted the gaps in service provision for the hypermobile community..

In 2012, following repeated requests from people with Ehlers-Danlos syndromes, Marfan syndrome and Osteogenesis Imperfecta, the HMSA agreed to provide the same support for those conditions. This was a huge step for the charity to take and was not designed to replace the existing charities who provided information on these conditions but to provide a ‘how to live with the diagnosis’ with a focus on managing the hypermobility, pain and fatigue, once a diagnosis has been made. The HMSA also developed a self-management programme for children and parents,. A structured programme was trialled and run at the HMSA’s 2012 Residential Weekend at St. George’s Park in Staffordshire.

Simultaneously, the HMSA developed educational sessions for health and social care professionals. This included non-health sector professionals, such as teachers, SENCOs, local authority employees. This programme of work has now been developed into the successful HMSA Kent Model (which you can read more about under the ‘Professionals Section’ of the website. As part of our work with professionals, we also developed and launched a ‘Professional Membership’ scheme.

The HMSA Today

Today, the HMSA continues to provide services run predominantly by approximately 45 skilled and trained volunteers who have one of the conditions it serves. Because of our focus on ‘living well with a hypermobility syndrome’ our volunteers who live with a condition themselves are perfectly placed to support the hypermobile community.  We now have 2 part time staff, who help support the overall work of the charity and to ensure that the charity continues to work in a positive self-management model.

The HMSA works closely with umbrella organisations in relation to national and international policies and service provision. The HMSA is well respected globally and works with similar organisations to help develop services and information for the patients and professionals in those countries. The charity also works with similar condition specific organisations, on a case by case basis, in the UK in a collaborative manner. The HMSA continues to be the place to go for information and education on the hypermobility related disorders that affect so many people in the UK and globally.

Our medical advisors include:

  • Dr. A. Hakim PGCert-TM, MA, FRCP
  • Dr. P. Bull, FRCP
  • Prof. Q. Aziz MBBS, FRCP, PhD
  • Prof. R. Grahame CBE, MD, FRCP, FACP
  • Dr. J. Clinch, FRCPCH
  • Dr. J. Eccles, MB ChB, Dip, MA, MSC, MRCPsych, PhD
  • Dr. H. Kazkaz, MB, MSc
  • S. Maillard, MSc, SRP, MCSP
  • M. Pook, Chartered Physiotherapist, AACP, MBSR
  • Dr. J Simmonds, MCSP, MACP, SFHEA
  • Dr. B. Tinkle, MD, PhD
  • J. Southall, Occupational Therapist
  • D. Wicks, CEO/Chief Medical Liaison Officer, RMN (ret)

Our Patrons include:

  • Norman Lamb - MP
  • Kaliya Franklin - Disability Rights Campaigner
  • Kate Monoghan-Cocker - Film / Documentary Maker
  • George Asprey - Actor
  • Jameela Jamil - Actress and Radio Presenter