The Hypermobility Syndromes Association was created in 1992 by patients with (what was then called) hypermobility syndrome or joint hypermobility syndrome.
We were supported by globally well-known and respected medical professionals and run by volunteers.
The charity provided a helpline service, membership scheme, residential weekends and a very successful forum and website.
It was the passion and drive of the volunteers that enabled the charity's rapid growth.
In 2008 the HMSA adopted positive self-management model for its core work. We started working more closely with those few services in the UK that were available to meet the needs of people with a hypermobility syndrome.
Good relationships were fostered and educational needs of clients and healthcare professionals in general were identified allowing us to highlight the gaps in service provision for the hypermobile community.
In 2012, the HMSA agreed to provide the same support for those living with Ehlers-Danlos syndromes, Marfan syndrome and Osteogenesis Imperfecta.
This was a huge step for the charity enabling us to provide a ‘living with the diagnosis’ focus to help management of the hypermobility, pain and fatigue, once diagnosed.
HMSA also developed a self-management programme for children and parents.
We also developed educational sessions for health and social care professionals including non-health sector professionals such as teachers, SENCOs and local authority employees.
This programme of work has now been developed into the successful HMSA Kent Model.
As part of our work with professionals we launched a ‘Professional Membership’ scheme.
Most of our services are provided by volunteers who live with one - or more - of the conditions they serve meaning they are perfectly placed to support the hypermobile community. Our focus remains on ‘living well with a hypermobility syndrome’.
Two part time staff support the overall work of the charity and ensure that the charity continues to work in a positive self-management model.
We work 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.
We are glad to report that we continue 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.