Latest News

The HMSA is 25!

Posted By FLICK MCLUCKIE, June 16, 2017

This year is the charity’s 25th Anniversary. The HMSA was originally created with the support of Professor Howard Bird, as a sister group to EDS UK. Other well known medical advisors assisted the original HMSA volunteers to set up a support system for people with what was then called ‘Hypermobility Syndrome’ or ‘Benign Joint Hypermobility Syndrome’.

Five years ago, after the work of the charity suddenly expanded, and at request of people who wanted access to our support groups, high quality evidenced based information, and our self-management programmes we opened the doors to everyone with a hypermobility related disorder, such as EDS (all sub-types), Marfan syndrome, Stickler syndrome, Osteogenesis Imperfecta and PXE. Although we predominantly work with the above conditions we would never turn away anyone with other conditions where mild hypermobility may be seen.

We will be celebrating our anniversary in Hampshire this weekend. Please see yesterday’s 25th anniversary e-news edition for more details, our social media, or this poster. We are also running a joint HMSA and EDS UK Residential Weekend at the end of September and perhaps it is a very poetic time for both charities to work together. More collaboration work with other patient support groups is currently being planned and we will let you all know as soon as events or projects are formalised.

One of the differences between the HMSA and other patient organisations is that we have for the last few years offered a professional membership. This allows us to advise, signpost or provide education days and information to professionals and service providers, helping to ensure that our members needs are being met to a high standard.
These are exciting times for the HMSA and plans for the next 25 years will surely see us grow from strength to strength.
So thank you to all of you who continue to support the charity and volunteer to help us provide the services we do.
Here’s to the next 25 years!

HMSA 25th Anniversary Family fun day picnic!

Posted By HMSA Social Media Coordinator, June 7, 2017

The HMSA is a volunteer run charity supporting people with hypermobility related health problems, whatever the cause of their hypermobility. This event (hosted by our Hampshire Local Group Volunteers) is a celebration of 25 years doing exactly that, we intend to have lots of fun and will have volunteers on hand to answer more serious questions people may have about our work and services, the conditions we support, how we can help and how you can help us!

See poster for more information.

Exciting News! HMSA and EDS UK Residential Conference

Posted By Donna Wicks, May 12, 2017

The HMSA and EDS UK are proud to announce that we are to run a joint residential conference, based on ‘Management and Wellbeing’ later this year.

The dates are 30th September to 1st October 2017 and the venue is Chesford Grange, Warwick.

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This will be the largest conference for this population of people in Europe, with space for 350 delegates and we are looking forward to meeting you all there. For many years the members of the HMSA and EDS UK have wanted the charities to work more closely together and we are happy to be able to show you some of the results of our work at this conference.

The conference will focus on how to live well with the conditions that both charities support.

The event is suitable for ALL HMSA members, including those who have Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome etc. It is an wonderful opportunity for people with the above conditions, and those with HSD (JHS) and EDS, to meet with each other and help shape the future work of the charities.

Of course, we will be bringing globally recognised experts along to share their knowledge and skills. Additionally, we are also running a childrens and teens programme. The programme details are still being worked on and we will of course update you as soon as we can.

We are very excited here at the HMSA, and we know that spaces will sell quickly, so please do join us and visit the web page as soon as possible to register your interest.

Please register your interest to keep updated on the conference and be the first to hear when tickets are released:

https://www.ehlers-danlos.org/health-and-wellbeing-conference-2017/2017-management-wellbeing-conference-register-interest/ 

Growing up a Bendy #MarfanMonday

Posted By HMSA Social Media Coordinator, May 8, 2017

Growing Up Bendy – Marfan Monday

Growing up with a HDCT can often be quite tricky and Marfan certainly threw a few obstacles into my life as I grew up. I suffered with aching joints, often referred to as growing pains by my doctors, that I’m sure many of you can relate to regardless of which condition you have, but I was a pretty determined kid and if I wanted to climb that tree then I was definitely going to climb that tree. I think my Mum struck the perfect balance of letting me do what everyone else was doing but also protecting me from potential harm, for example I gradually stopped playing some sports during my PE lessons at school due to risk of rupturing my aorta or damaging my eyes.

There were also often things that I could do with my joints that I didn’t know others could do until my classmates were impressed by my bendiness, sensible adult Shona now knows that doing such tricks is not good for me but at the time it definitely seemed fun to freak everyone out. It was probably not until my teens that my true differences stood out though, I was always much slimmer than my peers and my long legs and arms were clear to see. I was bullied for this at the time but now I get only compliments about my long legs from people who wish they had them, of course they don’t know the reason behind them. Growing up I always thought that I would stand out all my life, I would never fit in and be like anyone else but now I am past those years I can see that standing out doesn’t have to be a bad thing. I get stares all the time when I’m whizzing around in my powerchair and back then it would have really bothered me but these days I just acknowledge that people can be curious and I whizz off and get on with my day!

Growing up is tough for everyone with all those with hormones racing around and whilst us bendies may have a few additional battles to face I know for sure that when you look back things usually don’t seem so bad!

– Shona (HMSA Marfan Ambassador)

vEDS Awareness

Posted By HMSA Social Media Coordinator,

It’s Ehlers-Danlos Awareness Month!

Here’s a shout out to all those living with vascular Ehlers-Danlos syndrome!

It is a connective tissue disorder caused by known genes, and symptoms include:
– thin, translucent skin that bruises easily.
– very fragile arteries, gut wall, and uterus. These may rupture which can be life threatening, and so need monitoring.
– a characteristic facial appearance with protruding eyes, thin nose and lips, sunken cheeks, and a small chin.
– joint hypermobility usually in the hands (can be elsewhere)

The level of bruising is much more severe, and the skin much more translucent in vEDS than in hEDS or cEDS.

It’s actually quite common for people with vEDS not to know they have it until something drastic (like an anuerysm or organ rupture) happens. Early diagnosis is really important as it can mean that lifestyle can be adapted to reduce risks, and monitoring can pick up issues and address them before they can become life-threatening.


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.
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