Hypermobility Syndromes Awareness week is drawing to a close, we’ve learned loads from you guys and hope we’ve been helpful to you!
A significant part of the HMSA’s work is in educating professionals, on the impact of living with one of the hypermobility syndromes it supports. The main reasons for this include the facts that many of our members have such poor experiences in using the services they are being referred to. A snapshot Patient Experience Survey, of HMSA members, was taken a few years back that indicated that 55% of members take 10 years plus to gain a diagnosis of Joint Hypermobility syndrome, now known as part of the Hypermobility Spectrum Disorders. (This survey was undertaken before the HMSA brought all Ehlers-Danlos Syndromes, Marfan syndrome, Pseudoxanthoma Elasticum, Osteogenesis Imperfecta and Stickler Syndromes under its umbrella.)
The survey also showed that the members who were able to see professionals who were ‘hypermobility experts’ or involved in ‘hypermobility services’ had much better experiences. This included physiotherapy, rheumatology etc.
It was also clear via our work at that time, and in discussions with professionals, that most professionals did not receive any training on hypermobility syndrome when they were qualifying. Some professionals received training post-grad but this was limited. Of those who did, training usually looked at the ‘normality of hypermobility’ and not the ‘syndrome’ aspect that many experience.
The HMSA commenced working closely with the services allocated to hypermobility (‘hypermobility clinics’) to feedback the experiences of patients using them in 2008. This was received very positively by the service professionals and of course, an element of this work continues today.
We now work very differently and in recognition that not all members can travel hundreds of miles to see a recognised expert in hypermobility or attend a clinic. Additionally, it is in fact, the responsibility of all geographic areas to supply’ fit for purpose’ services, which meet the needs of the people in their catchment area. Some of our work has been delayed by the changes to the NHS commissioning and provision of services but we are now starting to work more closely on a commissioning level.
The HMSA feels it is important to ask service providers to take responsibility for the education of professionals working in services where they are likely to meet people with a hypermobility associated condition. This in reality is ALL services; including neurology, orthopaedic, gynaecology, gastroenterology, maxofacial etc. The more obvious ones include; physio, pain management, OT, rheumatology, genetics etc.
To assist with this the HMSA can now set up a HMSA Professional Masterclass in areas where we are asked. The funding of these needs to come from the service providers, or the delegates themselves, as we do not have ‘spare’ funding but this has not been a barrier in our experience.
To complement all of this the HMSA is also currently trialling a new HMSA model in Kent. This model includes the HMSA educating professionals, and is backed up by the work that the HMSA does with their patients. We have been able to run several Masterclasses to enable the education of the professionals in that area. This work has also allowed us to work on building a ‘care network’, which our Chief Medical Advisor, Dr Alan Hakim, explained to the professionals during his presentations. Part of the HMSA Masterclasses include, telling professionals what the HMSA has to offer for their patients. For example; most of our information is free of charge on our website, and the Helpline and open Facebook pages are there to support everyone. We also offer more individualised services and a membership scheme, which their patients can also access.
The HMSA has exciting additional plans which will directly assist Kent patients with a hypermobility syndrome. These will be announced as soon as our plans have been finalised! In addition, there is a lot of ‘behind the scenes’ work going on to use what has been learnt from Kent to help people throughout the UK and benefiting our global members too.
Once we have finished assisting Kent and reviewed the outcomes, we will be looking at running other programmes throughout the UK. The programmes are not quick fixes, they take a lot of organisation and professionals need to be able to free up time from seeing patients, to actually go and attend the Masterclasses. Obviously, people with a hypermobility associated syndrome will instantly benefit from seeing professionals who have had training. But it is probably more realistic to see this as a long term model, with several smaller goals achieved along the way.
A new snapshot survey will be undertaken in the next few months to assist us with setting objectives for the next few years. So please keep a look out for it to be announced in the e-news and in closed FB groups.
What we need to do now is to build up a database of professionals and services recommended to the HMSA because of a ‘positive experience’ by users. So if you have had a good experience in attending any of the services, regardless of department, then please do let us know. We are also very interested in hearing what GPs are known to be supportive and who understand about the conditions we support.
You can send us the details to email@example.com or use our social media*
We will collate this information;
- To give to people who need a GP or other professional or service in a specific area (something we are asked on a daily basis)**
- To give feedback to services
- To target for HMSA Professional Masterclasses
*Please note; any negative comments naming professionals directly on our social media will be removed. This isn’t because we don’t care. We do! But to be fair, any professional who is named as providing a poor service should be able to offer a defence, rather than being found automatically guilty! We hope that you will support this.
** Please note; With NHS services it is often the department that your GP needs to send a referral to and not a named professional.
Well….yesterday a very distressed mum called the HMSA for support and this is what she told us.
Her 14 year old daughter had been regularly dislocating her elbows and right knee without much trauma, for a couple of years since puberty. Now Annie was scared of school in case someone bumped into her and caused another dislocation and she was also embarrassed of being in her PE kit as she was covered in bruises with no recollection of their cause.
Her mum listened to Annie crying with persistent pain and watched her daughter sleep on the sofa, exhausted with persistent fatigue. Over the last six months her daughter was suffering from gastrointestinal symptoms, feeling constantly sick and reluctant to eat as it caused tummy pain.
To make things worse she had chronic constipation and was suffering from an irritable bladder leading to incontinence. Every time she stood up Annie felt exhausted and faint. Sh esuffered from palpitations and an inability to regulate her temperature.
Annie was previously very popular and a fantastic gymnast. She was a typical teenage girl to all intents and purposes. But now Annie’s friends had disappeared and the local education authority were concerned about her attendance at school. Annie was depressed, isolated,living with persistent pain and a host of symptoms which her GP didn’t know what to do about.
Annie’s Mum did some research and realised that she may have a one of the hypermobility syndromes. She called the Hypermobility Syndromes Association for advice and support.
This is a typical case of onset in teenagers with regards to some of the hypermobilitysyndromes.
Please help us to support Annie and her mum in getting the right information, and the right services, to improve her quality of life so she can start living it again!
Just Text 70070 followed by HMSA13 £5 or an amount of your choice. Don’t forget thespace between 13 and the pound sign.
Thank you for reading.
Without our volunteers, the HMSA would be at a complete standstill. Having only 2 part-time paid staff, means that the day to day work of the HMSA, is completed almost entirely by our wonderful and passionate team of volunteers. We do not have a physical office for volunteers and staff to congregate in, instead we all work virtually the majority of the time; liaising with each other by teleconferencing or email! This makes our achievements so much more amazing and we are all very proud of the work we do.
A few times a year our volunteer Team Leaders and Team Members meet up for training and to discuss the objectives of the charity. We are just about to meet up to discuss the impending changes to the categorisation of EDS, and the new diagnosis for people with Hypermobility Spectrum Disorder. We have volunteers up and down the UK, and we promise we are listening to all our overseas members and starting to look further away!
Volunteering for the HMSA has to be a good experience. People need to feel comfortable in the work they do for us and they are never without support. Each volunteer has a nominated Team Leader, who is responsible for the volunteering experience of those that they lead. In addition, our Volunteer Coordinator, Brenda Jones, is always around if needed for advice and support. We provide full mentorship to make sure our volunteers continue to feel rewarded and valued for the work they do. We help to provide goals for individuals to work towards and we can work with the DWP to assist with getting back to paid work if that is what the volunteer wishes.
Every volunteer who has face to face contact, or deals with any vulnerable person, must have full current DBS certification. It is important to us that our members feel comfortable and safe when using our services.
All organisations that have volunteers need to be able to offer training to equip people with skills needed for the role they choose. The HMSA is very keen to ensure we match the right person, with the right role. Whether it is for our;
- helpline, which took just under 900 calls last year,
- social media groups, which are over most of our social media platforms
- shop, which sends out membership packs, literature and our HMSA branded merchandise across the world,
- Information Standard process, we were one of the first charities to successfully gain accreditation, leading the way for many others,
- national groups, which assist with self-management, and (where volunteer group leaders are available) our local member support groups.
and much, much more.
Many of our volunteers go on to gain employment with skills they have developed through their work with the HMSA and through the bespoke training that we offer.
Not all our volunteers help us on a full time basis; the HMSA aims to make volunteering easy! This means we will be flexible to your needs (excuse the terrible pun!). If you wish to only do 2 hrs a week, we will find a role for you. If you have a specific role in mind, we will let you have a go and see how it works for you. If you want to volunteer but don’t know what you want to do, we will use our application and interview process to match you to a role.
Volunteering with the HMSA is a dynamic process, driven by passion for assisting people with Hypermobility Spectrum Disorders, or Marfan, EDS, OI, PXE or Sticklers, and for most it is a massively rewarding way of staying well informed, while helping themselves and others to live well with hypermobility syndromes. You don’t need to have one of the conditions to volunteer with us. We are just about to start recruiting people who have no hypermobility related conditions but wish to help the charity on its mission.
A few of the roles our volunteers play are very involved and time consuming (Not relying on paid staff, helps keep our overheads down), but most others require just a couple of hours a month. For more information about volunteering please e-mail firstname.lastname@example.org.
You can be as much involved with the charity as you like, after all, we’re here to serve you and nobody else!
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.
As with many rare conditions its medical terms can be long and difficult to pronounce, Osteogenesis Imperfecta! It is more commonly known as Brittle Bones Disease; while fragile bones are a significant part of the condition, there are many other aspects of the disease that are sometimes overlooked.
Osteogenesis Imperfecta is in fact a heritable disorder of connective tissue due to abnormalities in the collagen gene (COL1A1) which can also affect other parts of the body.
- Hypermobility and joint issues.
- Weakness in tendons and muscles.
- Flat feet
- Kidney Stones
- Gastrointestinal problems
- Hearing loss
- Heart problems
As each person is unique, no one person with Osteogenesis Imperfecta has exactly the same experiences or symptoms and often it varies over a person’s lifetime. There is a wide spectrum of people with Osteogenesis Imperfecta ranging from mild to severe.
It is very important that we all raise awareness of Osteogenesis Imperfecta and its impact on every level so as to enable everybody to obtain the appropriate support. Further details can be found on HMSA website http://hypermobility.org/help-advice/osteogenesis-imperfecta-2/
Please donate just £5 to the HMSA this week using our Just Text service, 70070 and text “HMSA13 £5 “or the amount you wish to pay. Thank you for your support.
I was diagnosed with Osteogenesis Imperfecta at the age of two after several broken bones. Apparently, the doctor who diagnosed me took one look at my eyes and saw that instead of white sclera mine were blue; a tell-tale sign of the condition. My parents were told that my bones would break easily, and that hopefully, this would lessen as I got older. I endured several breaks over the next few years and when doctors suggested that a warmer & sunnier climate may be beneficial, we emigrated from the UK to South Africa. I was about nine years old. Not many doctors in South Africa knew about OI, and so my orthopaedic surgeon learnt about it as we went along with various issues.
Only in my teenage years and my 20’s did it really come to light that OI was also considered a heritable disorder of connective tissue and it wasn’t just bones that were affected. That explained several things; the blue sclera and easy bruising, flat feet, and poor muscle tone to name just a few. Many people with OI suffer with heart problems and fatigue . My doctors had never mentioned any of this to me so it was a case of learning along the way.
In 2002, I had to have my two top wisdom teeth removed and had it done under general anaesthesia in a hospital, where a maxillofacial surgeon performed the extraction. My greatest fear was the possibility of my surrounding teeth been damaged during the operation. Fortunately I was in the hands of a very good surgeon and he had done his research! Interestingly, he informed me afterwards that my tissue was different to someone without OI and that I also bled more than the average person.
As I have now entered middle age, more challenges appear to await me. Self-management is always key to living well and thankfully, drugs are available now that weren’t many years ago but I feel that the future is still a scary prospect. Exercise is really important for someone with my condition but at the same time I have a real fear of injury because of the pain but limitations fractures can cause me. Swimming is one of the safest exercises for people with OI but unfortunately it has no weight bearing benefits, and we know that for people with OI (or for anyone really) there is a need to weight bear, as much as possible, as it helps to strengthen bones. Having a milder form of OI I have been fortunate enough to be able to walk but there are people with more severe types, who are heavily restricted and wheelchair bound.
Whilst I am glad that I have been able to mobilise independently, life has not been without challenges! Most people do not realise that I have OI, even though I am much shorter than most people and have a limp due to a shorter somewhat disfigured right leg. At school teachers, and fellow students, couldn’t really grasp my situation as they could see I could walk. This lack of understanding followed me into the working world.
Many medical practitioners in South Africa and across the world do not understand much about OI. They are therefore, unable to teach us about the conditions and how to best manage them. The public health care in South Africa is very bad, so people need to try and go privately to see professionals. This is very expensive but I am lucky that I have a specialist who at least understands osteoporosis in elderly care, so he has some advice and options he can give me and works in partnership to assist me in managing my condition.
People with OI have to educate themselves, which I think is something that anyone with a rare disease has to endure. This is what I think those of us with a rare disorder really needs, the both support and understanding. Having OI can affect one both physically and emotionally. Having support from family and friends can make all the difference in our lives. In today’s era of social media, and much wider access to organisations via the internet, information is easier to get and it helps to interact with other people sharing similar problems, and most of all to develop support networks, so you feel less isolated.
Julie Anne Beavis
Gauteng, South Africa
If you like Julie Anne’s story please donate using our Just Text facility. Please text 70070 and enter “HMSA13 £5” or the amount you would like to give.