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The role of Patient Organisations.

Posted By Donna Wicks, December 5, 2017

 The role of patient organisations is essential to the development of services and education. The HMSA agrees with the European Patient Forum survey (2016), as an organisation that is targeting the 3Ps! Our 3 Ps include, patients (service users), professionals and providers of services. It is reassuring to know that we are working along the lines that this umbrella organisation states is good practice. Our GP campaign, ‘Giving GPs the Tools’ helps meet the stated objectives of the survey.

Please help us to help you, as we target the professionals who are responsible for our access to the services that we so desperately need.

GPs are the gateway; they hold the power to diagnose more common hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome, which should allow access more quickly to services such as, physiotherapy, occupational therapy, podiatry, orthotics and of course, referral to specific departments that deal with the complex issues we face on a daily basis.

GPs have access to the ‘whole picture’. They can look at one of their patients and acknowledge that something is going on, which they may not understand. It is always best practice to rule out physical conditions before labeling people as having psychosomatic or psychological problems.

It is true that GPs don’t have long to see patients but if patients are re-presenting with problems, that should be enough of a signal to allow time for considering what the bigger picture is. We don’t expect GPs to know everything about everything. But we do want GPs to look into what could be going on.

It is also true that GPs only get approx £136- £146 per patient. That is too cover all tests, referrals etc. That is not a great deal of money but we can save the GP practices money by assisting them with information and providing a clear pathway, which we are developing under the HMSA Kent Model (this will be rolled out across the UK).

We can also help give GPs the confidence to diagnose the most common hypermobility related conditions, such as; hypermobility spectrum disorders (previously joint hypermobility syndrome) and hypermobile Ehlers-Danlos syndrome. A quicker diagnosis, would save on un-necessary tests and referrals and allow patients to be sent to the right place at the right time.

Our information packs will help by providing information that could highlight the missing links in a patients presentation. All professionals, regardless of discipline, have a duty to continue with their education, whilst still in practice. We have developed a coordinated approach which will help to put the information in the hands of those who control our access to services that we may need.

The information packs will consist of;

  •  An introduction to the HMSA
  • Details on all the conditions we support (HSD, EDS, Marfan, OI, Stickler, PXE. This will include symptoms and management. It will be made clear that we support other hypermobility related  conditions
  • ‘What’s the connection?’ posters and a selection of our HMSA publications
  • Information on the HMSA Kent Model, which  is ready to be rolled out across the UK
  • Offers for training at a discounted rate
  • Information on local HMSA support groups, which can provide their patients with more comprehensive support
  • Information on the 8 week self-management programme, which will be  trialed in Kent in 2018 and rolled out across the UK.
  • Information on the professional resources section of the website
  • Access to support from the HMSA Professional Team
  • A clear clinical pathway detailing how to meet the needs of their patients by referring to the right place at the right time
  • A survey for GPs to complete, which will influence future work in primary care.

We need you guys to get behind the HMSA. We need your support to help drive the changes that are needed.

There are numerous ways you can help;


a)   You can volunteer to help disseminate information on the HMSA campaign by sharing social media posts or taking the information about the  HMSA to services

b)   You can volunteer to work within the HMSA Team and support us all, as we get going on this important piece of work, just email      brenda@hypermobility.org

c)    You can share our information with your local press. We have a press  release ready to go! Just contact info@hypermobility.org 

d)   You can fundraise for the HMSA, we have a facility on our Virgin Giving  page for you to fundraise directly for the campaign. Just email and she will arrange for a pack to be sent out to assist you kate@hypermobility.org

e)   You can donate via Just Text HMSA13 to 70070 followed by 5 or 10,      depending on the amount you wish to donate

f)   You can donate directly on our campaign page on http://bit.ly/2j3ouc7

g)   You can continue to send in your experiences about services in your areas, including GPs. We are collecting positive and negative experiences. We will also anonymise these and send them to Healthwatch National for them to use in their projects.

Please do join us as we campaign for better services for you. We can help you today and change the potentially negative experience for those who are yet to be diagnosed. We don’t want our children or their children to go through 10 years of being disbelieved to get a diagnosis.

‘Giving GPs the Tools’ campaign – Need for Local Knowledge

Posted By Donna Wicks, December 4, 2017

Whilst we would like to see more specialist centres and more recognised ‘experts’ in all areas affected by a hypermobility syndrome, we acknowledge that in practical terms this would be difficult to achieve in the short term. What is not so difficult; is to ensure that all GP practices (and as many ‘other’ professionals too) are aware of hypermobility related disorders and HDCTs.

The HMSA hopes that with better training opportunities and by raising awareness of the hypermobility related disorders that rapid diagnoses can be made, which will reduce a lifetime of negative experiences of the patient in their health, medical and social care professionals.

Some people undoubtedly will need to be seen by specialists, who may or may not be experienced or believe in hypermobility related disorders. These people will always benefit by being confident that their GP can successfully navigate alongside them, ensuring that they see the right people, at the right time. The GP with knowledge of the hypermobility spectrum disorders will be able participate in the management discussions that will need to be had.

Help us to help GPs give you a better experience. Let’s work together to ensure that GPs understand the issues we face. This campaign will help people that are already diagnosed and those that are still waiting.

You can donate directly to http://bit.ly/2j3ouc7

Or Just Text HMSA13 to 70070 followed by the amount you wish to donate 5 or 10 (£)

Thank you for your support.

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout

Stickler syndrome Tasha Joy Chenard, #helpustohelpyou

Posted By Donna Wicks, December 3, 2017

I want to talk about spoons. SPOONS? Yes, yes, spoons.
Prepare for a long post
(I’m honoured if you would read it…)

But first, as many of you know and for those of you who don’t I was diagnosed with Sticklers syndrome when I was in grade seven, “also known as hereditary progressive arthro-ophthalmopathy”. It is a genetic disorder that can cause serious vision, hearing and joint problems. Here is the confusing and frustrating part.

Two years ago my sister was pregnant with her first daughter. She wanted to know if she had Sticklers too (the geneticist we saw in 2005 wasn’t able to give a decisive opinion on her state of having or not having the syndrome), for many reasons Melody wanted answers for herself. One to know if it was possible she could be passing it on and another to be prepared for any possible birthing complications.

So off to the U of A she went and met with who I will refer to as “The Red Head Geneticist”. She was full of information we had never been told. She heard my story from Melody, and said she wanted to see a picture of me. When she saw a picture and after getting our family history from Melody she informed Melody that she had a hunch I was miss diagnosed, I did not have a “Sticklers face” and whether or not if it was Sticklers, no 24 year old should be living captive with herself like I was, and she thought her and her colleagues could help.

She told Melody that Sticklers typically presents itself the same within a family. Well when you look at my Dad and I, we do not present the same. He is legally blind (since birth, which she took issue with because Sticklers is normally degenerative over time not rearing its head until puberty/early 20’s in my understanding), Dad is also legally deaf, but that occurred after a freak accident while he was getting tubes put in his ears, in his 20’s (he had on going ear infections and possibly some deterioration had started. It’s hard to say.) So this said none of his symptoms were really following the trend of Sticklers. Sure if you just look at the symptoms they do. But not if you look at the cause. Also I have not presented any hearing or sight loss like one would expect if it is to follow a trend within a family (sure I wear glasses but I see a specialist every two years and they have never found cause to worry, also 2&1/2 years ago I started having freaky hearing loss where I go completely deaf with no warning and then it comes back over time whether a few moments or days. But after hearing exams they say everything is completely fine it must be a brain thing.) All my big issues stem from bone and joint abnormalities (like coughing and dislocating my ribs).

Another thing to note is almost every Sticklers person is born with cleft palate, neither Dad nor I were born with a cleft palate. So “The Red Head Geneticist” said she would like to see our whole family and reassess this diagnosis. (Note in 2005 no sample was ever given or tested, just a check list of signs and symptoms. I checked off enough for them to make a diagnosis at that time. But Dad had NEVER been tested, just the same thing, he ticked off enough signs and symptoms that they felt justified that a diagnosis could be made).

So we were given a family appointment date, and arrived at the U of A genetics (what would you call it a clinic?). I arrived full of hope, ready for this life giving mystery answer from the “The Red Head Geneticist”.

Here is where it all takes a turn. We did not meet with “The Red Head Geneticist”, (let me explain I was on all kinds of meds and pain meds at the time, also this ended up being a very emotional day, so there are some things I am a bit blurry on.) One of those facts is I still don’t understand to today why we didn’t end up meeting with “The Red Head Geneticist”, but “The I’m Retiring In A Few Months Geneticist”. So here we are with “The I’m Retiring In A Few Months Geneticist”, and she had read over Melody’s file from “The Red Head Geneticist” and Dad’s file he sent in and My file I sent in. She took one look at Dad and I and said. “Yes, you two have Sticklers.”

Cue the puzzlement, I thought I was here because I didn’t have Sticklers, and we needed to find out what it is that Dad and I have, and if Melody has it too. No, she is positive we have Sticklers. What about the whole, a family will present the same way thing? Or that Dad had not deteriorated over years… I’m still lost and confused.

Here is what she did tell us. We were told that there are different strains of Sticklers and that with a blood test they can determine which one is in our family DNA, that they will be looking for a mutation in one of the genes that instructs our bodies how to build connective tissue. I don’t remember how many strains they have discovered, but here’s the catch. They know of ways to find say strains A,B&C but strain D they can not find in a blood test at this point. Dad sends a sample in and months later it comes back with “not able to be determined”. So it is concluded that we must have the strain that can not be found in a blood test at this time. I am left wondering what “The Red Head Geneticist” had in mind. So many thoughts and questions swirl around.

It is also in our family meeting with “The I’m Retiring In A Few Months Geneticist” that she says there is no help or research in Canada for or on connective tissues. When I ask her in her experience with Sticklers if I should pursue a pregnancy, she, with very little tact, said it would likely be a bad idea. Now picture this, I’m in an appointment without my husband (Jonathan couldn’t get off work) just given massive news about our future, sitting across from my sister who is rounding out and due in a month (don’t get me wrong I WAS AND AM so happy for her, it was just in that moment incredibly gutting), after being told A.) the hope you came in here with today for a new answer doesn’t exist, B.) there is no help for me in this country, and now C.) If you get pregnant you will likely never walk again and have a hard time keeping the pregnancy, because your body can’t build a strong enough home for baby to stay in. I was destroyed inside, even though I was with my loving supportive family I had never felt so alone or in such a dark place as I was in that room, tears streaming down my face. “The I’m Retiring In A Few Months Geneticist” says, “Oh but you can take lots of vitamin C.” All the hope I went in there with was gone, I was 100% more confused then ever.

This is kind of where all of that ended, we still don’t have an answer, they said to call back in a few years and see if they have advancements. So now what? Was the massive question. We have found ways to help me cope with the chronic pain. There are still days I wish I could just pop a pain pill and have it metabolize correctly instead of sending me into hysteria. This is what I do know, something is not right, and whether I ever have answers or not I have to learn to live and cope with it. I know I am in pain, I know I am always exhausted and game for a nap. I know I have dreams and goals that I plan on achieving. But how?

This is where the Spoon Theory comes in. (Thanks for sticking with me.) It was first explained by Christine Miserandino. The Spoon Theory is a creative way to explain to healthy friends and family what it’s like living with a chronic illness. Limited energy is represented by spoons. Doing too much in one day can leave you short on spoons the next day. If you only had 12 spoons per day, how would you use them? Take away 1 spoon if you didn’t sleep well last night, forgot to take your meds, or skipped a meal. Take away 4 spoons if you have a cold. Waking up with stiffness and pain handover 1 spoon. Joints still sore need to take a shower handover 2 spoons. Getting dressed need to reach your feet to put socks on, do up a few buttons maybe change outfits a few times cause you wanna look your best? That’ll be 2 more spoons please. Gotta make it to the kitchen to make breakfast, handover another spoon. You can see how this goes…

Take this weekend for example, I made sugar cookies on Saturday with Jon, then we shopped for ingredients, I’m also trialing contact lenses (thats extra effort and draining as they start to irritate), get home put groceries away, make the dough, roll the dough, cut the dough repeat. Then ice all the cookies. About 1/2 way through my stomach got sick and Jon ended up finishing it all by himself. I’m lucky he understands and will do what ever when ever he can. But I missed out on the fun. By 8 that night I was tapping into Sundays spoons. Didn’t sleep great Saturday night. Jon couldn’t get me awake Sunday morning, every time I tried to get out of bed everything hurt with a vengeance. Finally around 12:30 I got up and got ready for the day. We had planned to work on a few Christmas gifts we are making in the garage, so out we went. I didn’t want to wreck my new runners so I started with flip flops. I know not my brightest. That quickly shot my knees and feet so in the house I went tracked down my slippers which had my insoles in them and transferred insoles to runners. Back in garage, first coat of paint done.. I think you get the picture by 6 yesterday I was so fried I couldn’t get myself out of the grunge clothes and into street wear, because we needed groceries. Jon helped me get changed. I didn’t need to go with Jon… but I knew he is working lots this week and the only chance I would get to go out wouldn’t be till Thursday. So out we went. By the time we got home I was hardly able to move. I woke up this morning after a very restless night due to pain and could hardly get to the kitchen for breakfast. I need to learn how to better pace my spoons… but also there are times and days where I need to tap into the next days.

Today I pay for the weekend, in all reality probably tomorrow too. I couldn’t even write this if it wasn’t for speak to type technology.

I’m grateful for all we got done, I’m filled with happiness looking back on the Christmas joy we got to share as best friends, the laughs and impromptu garage dances. Today I choose to revel in the great productive weekend. Learn what I can about balancing pacing. Look to the future where we might have answers.

I have learnt this. A diagnosis is just a name for the reality already being lived, it shouldn’t change anything other then possible help. So with or with out a diagnosis I dig my heals in, brace for the ride and choose joy.

Thank you for reading this, thank you for taking a step in understanding a bit about my life. If this in anyway helps you please let me know. Remember we are not alone!

Tasha Joy Chenard

To support our work in the ‘Giving GPs the Tools’ campaign please,
Just Text HMSA13 to 70070 followed by 5 or 10 (£s).

or use our campaign page and donate on therehttp://bit.ly/2j3ouc7

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout

The HMSA’s ‘Giving GPs the Tools’ Campaign! – Lost Childhood

Posted By Donna Wicks, December 2, 2017

Why we do, what we do.  #helpustohelpyou

(How long did it take me? I was diagnosed at 54. I had pain all my life but I have only just been told what was wrong with me.)

This 10 year journey sees our members feeling dismissed by medical professionals, who have no understanding or little knowledge, of what can often be complex and multi-systemic conditions. There is little training for medical students on the subject and post qualification training may not cover heritable disorders of connective tissue or hypermobility spectrum disorders.

(No-one believed me. They said it was all in my head! But I knew it isn’t normal to have pain all the time! I feel so angry…)

To read more about the work that the HMSA is taking on for the benefit of all who are already diagnosed and those yet to get a diagnosis of one of the hypermobility related disorders it supports please visit

http://bit.ly/2j3ouc7

If you wish to donate via JustText text HMSA13 to 70070 and the amount you wish to donate either £5 or £10. Thank you for your support.

#HelpUsHelp – GP Tools, There is always *something* that can be done, so we’re doing something about it.

Posted By FLICK MCLUCKIE, November 30, 2017

It’s time! The HMSA are delighted to finally launch our “Giving GPs the Tools’ Campaign.

In this video, our Youth Patron and Hypermobility Spectrum Disorder Ambassador, Hannah Ensor describes the importance and impact of this new project.

We know it can take years for patients with hypermobility related health problems to receive a diagnosis, often due to their General Practitioners belief that ‘there’s nothing we can do anyway’. With no diagnosis they’re unable to access appropriate support resources, so the patient becomes less and less well, before finally receiving a diagnosis or referral once their condition is out of control. All this only to find that much of the time the department to which they’ve been sent has no idea how to treat them.

There is always *something* that can be done, so we’re doing something about it.

We’re raising funds to develop and deliver GP resource packs providing Information Standard material to GPs, ensuring they’re made aware of the potential for hypermobility related health problems, of recent changes to terminology, that they understand the broad scope of the symptoms that can be associated with these conditions, how they can diagnose the more common disorders themselves, how these can be treated and the signs that suggest specialist help may in fact be needed. We’ll also be making sure that GPs are aware of the national and local #MSKnetworks resources available to them, and their patients.

When GP and patient work in partnership supported self management becomes a real and achievable solution, particularly when ongoing condition specific peer support is available. This reduces the load on the GP, on local walk in and emergency services, improves the patient’s quality of life and confidence that their condition is manageable. Everyone wins.

Of course, this is only the beginning of our efforts to improve front line support for self management… you can read more about the ‘HMSA Kent Model’ at http://bit.ly/2nhsn1p

So, #HelpUsHelp – we want to reach everyone and this campaign will ‘prepare the ground’ for taking the Kent Model to pastures new, it’s in everyone’s best interests that we ensure the first health care practitioners most people access are not only #HMSAware, but confident providing appropriate support to enable their patient to improve their situation and manage their condition.

You can donate via text – JustText HMSA13 5 or HMSA13 10 (pounds) to 70770

To donate other amounts, or to read more in depth information about the campaign, visit our VirginMoneyGiving page: http://bit.ly/2j3ouc7


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.