Latest News

Invitation to become a Professional HMSA Member

Posted By Donna Wicks, August 23, 2014

At the request of one of the HMSA members we have produced a letter inviting your professionals to become a member in our new Professional scheme.

You can download the letter here. Invitation-to-be-a-Professional-HMSA-Member-Aug.2014 v.4

Together we can increase our knowledge and skills in managing Heritable Disorders of Connective Tissues or hypermobility syndromes.

Peterborough group Aug 2014

 

 

Chronic pain may be genetic!

Posted By Donna Wicks, August 22, 2014

Ever wonder why some people seem to have a higher tolerance for pain than others? New research – due to be presented at the American Academy of Neurology’s 66th Annual Meeting in Philadelphia, PA – suggests the answer is genetic. (David McNamee of Medical News Today (21st April 2014))

The research forms part of an investigation into the causes of chronic pain.

munchausenChronic pain can come from an ongoing ailment, such as arthritis, cancer or an infection; from a one-off injury such as a sprained back; or it can even occur in people who have suffered no specific injury or illness.

People who suffer from chronic pain may get combinations of headaches, low back pain or nerve pain, among other symptoms. People with chronic pain also might have chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, tempromandibular joint dysfunction or vulvodynia.

To read more of this article please use this link  http://www.medicalnewstoday.com/articles/275695.php

What the HMSA Does

Posted By Ben Cooper, August 14, 2014

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.

 

Support and advice for people affected by hypermobility

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.)*

 

Education

We provide education to schools, sporting establishments and medical professions including consultants, GP’s, physiotherapists, occupational therapists, podiatrists, dieticians and psychologists, who wish to advance their knowledge and understanding of the hypermobility syndromes in all their forms.

• Patient focussed residential conferences and hypermobility masterclass events which can include lectures on various aspects of hypermobility and it’s management, group physiotherapy and hydrotherapy sessions.**
• Printed information – leaflets, booklets and posters – all of which meet the stringent standards set by the IS. (some of these booklets are included with membership packs)
• Monthly e-newsletter*
• Bi-annual Journals – in each issue we have articles written by our Medical Advisors and other members of the association, keeping our members informed of current progress in the world of Hypermobility Syndromes.* †

 

Focussed support for children and young people

We provide specific information for children and their parents to help families who often just don’t know where to turn.

We run specialist family programmes, where families can learn together how best to manage the many symptoms relating to hypermobility, gain confidence and ask any questions they may have.

• 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 journal specifically aimed at children and teenagers
• 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 Jenny Parris (a practicing school nurse) for parents to get advice on accessing the support available to their child.*
• 1:1 sessions with trained staff.*

 

Support and advice for professionals working with people affected by hypermobility

• Work closely with hypermobility related specialist service providers to improve their service provision, including running patient focus groups.
• Run 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. †
• A copy of the twice-yearly HMSA Journal in the spring and autumn. (Professionals can contribute to the Journal by submitting articles, case studies and research opportunities.) †
• 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’. †

 

Raising awareness

• Stands at various events, both local and national, across the country, and at relevant medical conferences, such as the British School of Rheumatology conference
• Social media and website advertising campaigns
• Posters and awareness leaflets for GP surgeries, hospitals etc.
• News stories and press releases.

 

Research

Research into all aspects of hypermobility is key to gaining a better understanding of the needs of those with an hms and ensuring treatment provision. The HMSA contributes to research by directly funding grants or by co-applying for research projects with our Medical Advisors.
• Funding research projects
• 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

Introducing Our New HMSA Chairman

Posted By Alan Hakim, August 3, 2014

Dear All,
RobSmithI’m tremendously proud and greatly honoured to be taking up the role of Chair of the HMSA. Our previous Chair, Nick Bane, has led the HMSA through some challenging times and there is no doubt that her stewardship has left the charity in a very positive place. I would like to take this opportunity to thank her for her commitment, passion and hard work over the years, and I’m pleased to confirm that she will continue to support the present board.

My first official role, as Chairman, is to thank our amazing team of staff, volunteers and dedicated medical professionals, for their hard work leading up to, and over, the Residential Conference weekend. The conference would not have been possible had it not been for Donna Wicks and Alan Hakim, who worked tirelessly to pull the event together. They were more than ably assisted by fellow Trustees Ben Cooper & Jenny Parris and I am sure that all those who attended would like me to pass on our thanks for all of their hard work and dedication. We have been truly overwhelmed with the positive feedback and correspondence we received over the weekend and in the last few days. The team will now have a small chance to catch their breath and then the planning for 2016 will begin!

The charity has a challenging and very exciting time ahead and I believe that we are on a path to great things. It is clear to me that a positive soul runs throughout the whole charity, which will provide a solid foundation from which to grow and further develop our work in providing support, education and raising awareness of the issues associated with hypermobility syndromes.

As many of you are aware, we have recently re-branded, and our members have already received our amazing new HMSA Journal. As part of our on-going commitment to provide the most up-to-date and accurate information possible, our editor, Claire Smith, has recently reviewed and revised the HMSA ‘Guide for Schools. The 32-page guide is a valuable source of advice for all parents and school staff who care for children (from primary school age through to higher education), who are affected by the hypermobility aspects of Heritable Disorders of Connective Tissue. We are very grateful to Claire for undertaking this comprehensive piece of work. The guide will further complement our amazingly successful new HMSA Educational Support Group run, on-line, by our Education Development Coordinator (and newly elected Trustee) Jenny Parris.
Finally, I would like to thank all of our HMSA members for their loyalty to the Charity. With your on-going support, we will continue in our mission to drive forward knowledge and understanding and to provide you with trusted, safe, information and advice, backed up with the highest possible standards of service and good long term value.

Robert Smith
Chair

 

New Membership Rates

Posted By Ben Cooper, July 25, 2014

The HMSA has today released it’s new annual membership prices as follows:~

New Individual Membership – £24
Individual Membership Renewals (for 12 months) – £20

Family Membership – £30
Family Membership Renewals – £28

International Memberships are subject to an additional £9.
Concessions* 20% Discount

Please note the terms and conditions of our membership and the ways in which you can pay (ie: monthly by standing order) have not changed.

These new prices will ensure that the HMSA can continue to provide the superior membership benefits which have been introduced over the past 18 months, including: bi-annual journals, monthly e-newsletters, enhanced social media network, increased numbers of local groups throughout the country and raising awareness nationally through educating our database of medical professionals.

A full list of membership benefits and what the HMSA provides will follow shortly, and new membership prices will be available to purchase from our shop by Friday 8th August.


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.