May was Ehlers-Danlos Awareness Month
The HMSA has been busy holding fundraising and awareness activities up and down the UK as usual this May. We have held events every weekend of a variety of descriptions.
We would like to thank our fundraisers and more of their activities can been viewed on our Facebook pages.
Staff and volunteers alike are exhausted but feel it is a worthwhile month-long event. One of the most interesting discussions centring around how to raise awareness of complex and multi-systemic conditions such as EDS is where do you draw the line when portraying the conditions? This is something the HMSA is continuing to address within our work and campaigning.
Do a Mile for EDS
The HMSA launched its new annual May fundraising activity called ‘Do a Mile for EDS’.
The concept was designed to encourage us all to take part in a physical exercise of our choice such as skipping, walking, pushing themselves in a manual wheelchair, running etc. Fundraisers could pledge to do as little as a mile, which could be spread out over 31 days if needed.
This has proven to be a very successful and fun project where the participants have enjoyed entering their miles on the website and watching the HMSA logo move up the UK. We currently have less than 74 miles to achieve our target of getting from Land’s End to John O’Groats. You can follow the progress of some of the walkers here.
HMSA’s Family and Self-Management Programmes
During every May weekend the HMSA has run either its full HMSA Family Programme or elements of the Self-Management Programme up and down the UK. We have had over 12 events including in Edinburgh, Bury, Manchester, Birmingham and London. The last weekend of May we are holding a programme again in London and also in Plymouth.
Trip to the Zoo
Thanks to a donation from Galaxy we are ending our busy month of May by taking the children to the Sparkwell Wildlife Centre. One of the things our younger and family members ask us is to provide more social activities which we can incorporate our ethos. So this year a trip to the zoo will include elements of pacing and activity, whilst allowing all the attending members a chance to contribute to the last of this year ‘Do a Mile for EDS’. Thanks to Galaxy for donating £300 for the HMSA to provide this opportunity.
New guidelines for GPs on Joint Hypermobility syndrome or Ehlers-Danlos –hypermobility.
The HMSA is pleased to announce the guidelines for GPs when presented with a hypermobility syndrome such as Joint Hypermobility or Ehlers-Danlos syndrome Hypermobility. The HMSA was involved in discussions around this document 18-24 months ago with Professor Ferrell who was keen to design the advice sheet for GPs in the West of Scotland. This document has been a long time coming but should assist GP’s with diagnosis, treatment and management. Please note this document does not fall within the scope of the HMSA’s Information Standard.
Attending professional conferences is worthwhile.
The HMSA attended the British Society of Rheumatology Conference 29th April- 1st May 2014.
Our stand was very busy and we believe this success reflects the hard work of staff, volunteers and our medical colleagues in raising awareness of these conditions and the impact it has on individuals and their families in all aspects of life.
The HMSA’s CEO also presented in the Special Interest Group on HCTD’s which was an honour to be asked. The presentation was on ‘Plugging the Gap’ and highlighted how the HMSA works with service providers to meet the longer term needs of the service users which are often unable to be addressed due to the restrictions in health and social care provision.
Our attendance at the BSR resulted in the HMSA being asked to assist with training on the perspective of service users and how we can support professionals by many other service providers and medical professionals at the BSR. We look forward to attending the services throughout the UK over the coming months.
The HMSA also launched its new Professional Membership Scheme at the BSR. It was felt that so many professionals were contacting the HMSA for assistance and support for their individual patients that we were in a unique position to offer a bespoke membership. The aim of this will be to bring together a population of hypermobility syndromes service users and the professionals in one place, enabling better communication and opportunities for learning for both parties alike.
Patron of the HMSA, Hannah Ensor, publishes
an excellent ‘Pain Communication’ leaflet.
The HMSA’s Patron, Hannah Ensor, of Stickman Communications Ltd, has been working with Pain UK to publish a highly valuable document for patients and professionals alike. This was also well received at the BSR by the professionals who had an opportunity to preview the A4 double sided leaflet.
The document is now officially launched and is highly recommended and can be obtained from her website www.stickmancommunications.co.uk.
Jeans for Genes Grant
The HMSA is pleased to announce that it has been awarded a grant to run a HMSA Family and Self-Management Masterclass.
The event will be held in Kent on the 6th September 2014 and will be free to delegates attending. We would like to thank Jeans for Genes and Genetic Disorders UK for the award.
If you are interested in attending please email email@example.com.
The HMSA is currently seeking a new Treasurer to assist the charity. The Treasurer will work closely with the CEO and Board of Trustees. This is the first time we have decided to recruit outside of the charity and reflects that the charity is growing rapidly and needs to bring in a new skill set. If you are interested in working with a dynamic charity and have the skills, time and commitment to offer we would be pleased to hear from you. Please email firstname.lastname@example.org for further information.