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!

Hypermobility Spectrum Disorder and what it means to me…

Posted By FLICK MCLUCKIE, March 15, 2017

Our volunteer team took the opportunity to ask HMSA HSD Ambassador and Patron Hannah Ensor a few questions about how the changes to the classification of hypermobility syndromes might affect her.

What is your diagnosis?

My official diagnosis is “Joint hypermobility syndrome”. (JHS)

Over the years it has flickered between JHS, HMS and EDS hypermobility type, depending on who was writing the letter, and what I’d told them.

So although EDS is listed on some letters, I’ve only ever been formally diagnosed with JHS.

What do you think you would be classified as under the new system? 

From what I’ve seen, although my Beighton score is low (1/9) the system allows for ‘generalised joint hypermobility’ regardless of score, which is definitely true of me.

But I only have mild skin issues so I don’t score enough points in that section to qualify as hEDS.

So I think I’d be generalised hypermobility syndrome (G-HSD.)

How does your hypermobility affect you?

I have generalised bendiness with instability in practically every joint – and yet my beighton score is low because my knees and elbows don’t bend backwards. They bend sideways, and rotate in ways they really shouldn’t.

I have POTS – quite severely.

I have reflux and mild issues with a slow gut and a bendy bladder.

And plenty of pain and fatigue (which I almost forgot to mention because it’s become so normal for me.)

It affects me every day, every minute. Looking at my life objectively, there is very little I do in the same way as an ‘average’ young woman – I have had to adapt every aspect of my life, using a wheelchair, being conscious about posture, daily physio to enable me to function, pacing, lying down and moving about to manage POTS, avoiding heat – all sorts of things. It even affects what and when I eat and what I wear.

Does it annoy you that POTS and gastro-intestinal issues are not included in the diagnostic criteria?

It’s a bit frustrating, but actually there’s not yet enough information on how they are linked. Both POTS and gastro-intestinal issues can have lots of different causes so they can’t be part of the diagnostic criteria until they are better understood. Thankfully the new information is very clear that doctors should be aware of, and look out for these linked conditions in someone who has an HSD or hEDS – and there’s some really useful management guidance on them too. I really hope more research happens soon, but until then I think I’m in a better position for accessing help with POTS and GI issues because there is now clear, concise, up-to-date information I can refer my doctors to – regardless of whether I’m HSD or hEDS.

Do the changes scare you?

Of course. Change is scary, and as it took me 20 years to get my current diagnosis, the thought of possibly ‘losing’ the respect that saying ‘I have EDS’ can get from medical professionals is very unsettling.

What would you say to others who are in a similar position?

I’ve found it helps to focus on the fact that it said that HSD is not necessarily milder than hEDS – both can vary in severity. And the HMSA ‘clinicians guide’ (which I’ve heard a little about) is explicitly for both hEDS and HSD – making it clear that us HSDers can experience the same debilitating symptoms and even the same associated conditions – POTS, gastro, MCAD etc. So once it’s published we’ll put a link to it here [Edited to add: An update for clinicians].

This has never been officially, scientifically acknowledged before, and this fills me with hope that more and more doctors will take HSD seriously. Far more seriously than ‘hypermobility’ ever was.

And don’t forget that charities like the HMSA are on our side – helping to ensure that all of us are taken seriously. They not only support patients but educate medical professionals too. Being Patron, volunteer and HMSA HSD Ambassador, I’ve seen first hand how hard they are working to ensure that people with HSD are not seen as ‘just a bit bendy’. I’m actually doing a talk as part of an HMSA Hypermobility Masterclass on living with HSD for medical professionals that the HMSA is helping to run in a few weeks time. I will be fighting the corner for everyone else with an HSD too.

What will you be doing next about your own diagnosis?

Carrying on as normal.

Treatment for both hEDS and HSD is symptom-based in the UK. I don’t need to see someone to officially get ‘re-classified’. Re-classification is something that will happen along the way if I need to access services/support/advice through someone who thinks it would be helpful to re-assess me. And actually I can expect to be reclassified at various times during my life as my symptoms change – because it is a spectrum condition which can change over time.

And until I’m reassessed I will either use HSD or JHS – not assessed under the new system yet.

And on a reassessment note, I like that this new system recognises that it is a spectrum that people can move about on. Being G-HSD doesn’t mean ‘definitely not hEDS’ – it means ‘currently not showing specific symptoms of hEDS – symptoms may emerge later so keep an eye out’. If I become less symptomatic it might change to Asymptomatic-HSD – or if I get more skin related issues it might change to hEDS. If I get less flexible with age, but haven’t developed symptoms that class me as hEDS I can slide along to H-HSD (historic HSD) – whatever my symptoms are, I can have a diagnosis that accurately reflects how I am affected and flags up the potentially linked conditions to look out for. It’s so different from the previous system that it’s a lot to get my head around and will take me some time to get used to!

How would you summarise how you feel about the new classification and associated information?

Well…

…a bit of “oh help, it’s changing” is going on in my head….actually, maybe quite a lot!

But underneath that, having read a lot of the new medical articles in the journals, the new criteria and all the linked information that has been published along side them means that although I don’t think a positive effect will be instantly visible, I think the future is looking up.

So I am taking a deep breath, ready to ride out any initial period of uncertainty, but full of hope for the future.

Letter to Health Professionals regarding EDS Classification 2017

Posted By FLICK MCLUCKIE,

Please see attached document, reproduced below the link. To print please right click on the link and ‘save file as’ We will make this available in other formats as soon as possible, thanks for your continued patience.

professional letter, re 2017 EDS criteria and HSD    PDF version – prof-letter-1

 

 

15th March 2017

Dear Health Professional,

Your patient has brought this letter to you following changes published today, to the classification of Ehlers-Danlos syndromes and to the Joint Hypermobility syndrome diagnosis. Many of the people affected by these changes are understandably worried about the future impact of these changes on their care and treatment. The HMSA has updated our website on information which may be of help to you and your patient.

The diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS, previously known as Ehlers-Danlos hypermobility) have changed significantly, details can be found on our website. In addition ‘Joint Hypermobility syndrome’ is now obsolete having been replaced by the diagnostic term, Hypermobility Spectrum Disorder. You can find details of these changes, including an article called ‘Hypermobility Disorders – An update for clinicians’, on the HMSA website, hypermobility.org

The HMSA has been working with people with Hypermobility Spectrum Disorders for 25 years and is best placed to share its considerable experience and education opportunities. A few years ago, at the request of members, we agreed to bring all the  Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome and PXE under our umbrella to promote ‘living well’ with these conditions by providing self-management courses and information. We also offer a helpline, social media closed support groups and a patient membership.

The HMSA can offer assistance to medical, health, social and educational professionals in providing information or support to practitioners. We also offer a professional membership scheme which has proven to be very successful and run bespoke HMSA Hypermobility Masterclasses for clinicians. If you would like more information please contact us by emailing professionals@hypermobility.org

Yours sincerely,

Donna Wicks (CEO)

HMSA statement on release of new EDS nosology.

Posted By FLICK MCLUCKIE,

The HMSA listened with interest to The Ehlers-Danlos Society webinar this afternoon (GMT).

We will be discussing the finer details and come back to you with any further comments in due course.

In the meantime, please know that the HMSA has been working with HSD for 25 years and believes we are well placed to continue to offer our experience to the HSD community. We will continue to lobby for earlier diagnosis, treatment and management.

With regard to the changes to the nosology for the EDS syndromes, the HMSA is pleased that recognition has finally been given in the influence of hypermobility.

The HMSA has been an umbrella group for many years for people with HSD, EDS, Marfan, Stickler, OI and PXE because of the lack of support for hypermobility issues.

We are very passionate about our work to assist people in living with their complex and multi-systemic conditions and in educating the professionals that members are likely to meet in their journey, through the health, social and education services.

We are already directing and assisting with a care pathway in the UK and  have developed an HMSA Hypermobility Professional Masterclass, which is run regularly. Currently we are developing a new model of work in Kent, which involves building up a network of professionals, who are trained by us and our medical advisors. This is on top of us trialling a new HMSA Self-management Programme in conjunction with local services.

The services we supply enable us to support everyone because these services are devised by real representatives of people with the hypermobility disorders or syndromes. You, whether a full HMSA member or a member of our wider community, are what matters! It’s your needs we aim to meet and support.

There ‘really’ is room for everyone under our umbrella!

Best wishes,
Donna, CEO

Professional Membership of the HMSA, Jo Southall (OT) for #HMSAware

Posted By FLICK MCLUCKIE, February 24, 2017
My relationship with the HMSA started way back in 2010. At the time I was a 19 year old outdoor adventure instructor with mystery joint pain and an impressive range of injuries. A physiotherapist mentioned I was ‘pretty hypermobile’. After half an hour on google and I was fairly convinced I did, in fact have Hypermobile Ehlers Danlos Syndrome. I spent the next year on the then HMSA forums, learning everything I could. When I finally managed to see a rheumatologist they confirmed my suspicions. 
The diagnosis was a turning point my life, It became clear that my impressive range of injuries were unlikely to clear up and my job was likely to become impossible. Age 21 I got my first wheelchair and headed off to university to study Occupational Therapy.  Over the 5 years it took me to become an Occupational Therapist the HMSA was a constant source of support and I did my best to repay the favour by volunteering.  Now I’ve finished university and the HMSA continues to be a source of support and inspiration, not only in my personal life but my professional one as well.  
Part of the HMSA’s mission is to support people with hypermobility syndromes and this includes creating a wider network of experts across the UK and around the world. Many of our members are severely disabled by their conditions, this is exacerbated by lack of access to medical professionals with the interest and proper knowledge base to help. By spreading awareness to both the general public and health and social care professionals we aim to support early diagnosis and proper intervention.
  
Becoming a professional member gains you access to our evidence base, professional support and development. The Professionals only groups provide learning and networking opportunities. As a professional member you also get priority booking for professional development events.    
 
The HMSA provides a constant supply of information standard approved resources, the perfect starting place if you’re new to the condition. Regular updates are provided in the twice yearly journals and quarterly e-newsletters and as a professional member you have the opportunity to submit articles and get published in both of these. Professional membership also offers you access to a highly trained and dedicated team of health and social care experts on Heritable Disorders of Connective Tissue. Initial contacts for this are Dr Alan Hakim (Chief Medical Advisor) , Ms. Donna Wicks (CEO/RMN). If you’re a researcher the HMSA will also provide email support and even assist with recruitment for relevant studies.  There is also the option of having your details on a ‘contact list’ for the HMSA to use to inform patients of your services.  
There is more information about the specific benefits of Professional membership on the HMSA website.
Personally, I think there is one benefit worth more than any of the others. As a professional member you have the opportunity to learn how living with a hypermobility syndrome truly impacts the lives of your patients. The HMSA is run by a dedicated team of volunteers and supporters, many of them, (like myself) are trained health and social care professionals. They are also patients. Living well with a hypermobility syndrome often means daily physiotherapy, lifestyle adaptations, mobility aids, medications and more. The day to day experiences of patients are parts of life that medical professionals are rarely privy to. Here with the HMSA you have the opportunity to experience that, learn from it and use it to improve your professional practice.   
 

Jo Southall, HMSA Volunteer & Independent Occupational Therapist.

To support the work we do please Just Text “HMSA13 £5” (or your preferred amount) to 70770. Your donation is appreciated and goes directly to members support, we are volunteer run so we don’t have large overheads.


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.