The Hypermobility Syndromes Association

Good evening all,
Last week we did a shout out for anonymous questions. It was timed well with the England Kick-Off 🤦 So! We will shout out again :D If you have a #HMSAanonQ you would like to ask our followers and remain anonymous, drop us a message in our inbox starting with anon q. We will then let you know when it is organised for and send the link once it's out :)

Getting Involved In Fundraising for the HSMA!
Where do I start? The best thing to do is to contact our Fundraising Team on fundraising@hypermbility.org, where somebody will be able to provide you with an application form and arrange to get a fundraising pack (including T-Shirt, Noise Maker, Balloons, Stickers, Hand Flag and Information Leaflets) sent to you – this is providing you are happy to commit to raising a minimum of £10 for us!
Can I set-up a fundraising page online? ...Absolutely! We encourage all our fundraisers to set-up a page using Virgin Money Giving – where you can set-up a page easily and link it with the HMSA’s – any donations will then subsequently be forwarded to us automatically each week. We can also help to promote your page if you wish.
How do I get my funds to you? Whatever is best for you – you can either send a cheque to our registered office, arrange to pay by BACS (please ask for details) or ‘donate’ the money via either PayPal or our Virgin Money Giving page.
Please also ask for Gift Aid forms if you are eligible to do this and send any completed forms to our registered office with any relevant funds, or a note as to how they have been sent.
How do I let people know about my fundraising? If you are happy for us to do so, we can pass you over to our Social Media team who would happy to work with you on promoting your event via our Social Media network, both in the build-up and directly prior to your event taking place.
I want to Fund Raise but I don’t know what to do! If you are stuck for ideas of what you could do for us, there is a list of suggestions below for you – alternatively, if you contact fundraising@hypermobility.org, where our team will be glad to help support you with any other ideas you may have.
https://buff.ly/2GoErqh
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Marfan Monday - Genes and Inheritance in MFS
Marfan syndrome is relatively rare, buy affecting approximately 1 in every 10000-15000 people. There is usually a family history but about a quarter the cases may be the first in the family. This is because a new (‘spontaneous’) gene defect has occurred during the earliest stages of that persons’ embryonic development.
The condition has an ‘autosomal dominant’ pattern of inheritance, which means that a parent with MFS has a 50:50 c...hance of passing on the faulty gene to each of their children.
Although there is a gene test that can help support the diagnosis there are two very important things to be aware of:
1. The finding of a defective gene does not give any indication as to how serious the condition might be. This is because ‘expression’ of the gene (how it manifests itself clinically) varies between individuals, even in the same family. Offspring may have very mild problems and symptoms, even if a parent has a lot of problems.
2. A negative test does not completely rule out concern. This is because there are so many gene defects that the relevant one may be so rare or brand new that it cannot be found using the tests undertaken. In most cases a diagnosis of MFS will be based on a detailed physical examination and assessment of the medical and family history.
Find out more about Marfan Syndrome on the website: https://buff.ly/2JWj6Do
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#SelfCareSunday! A little late today I'm afraid for #CraftHour. I have been lacking on my crafting as I have been getting into fishing! How are your makes coming along? Kim :)

The HMSA Charity support all hypermobility syndromes from Hypermobility Spectrum Disorder to PXE. We have lot's Zebra themed items for sale and interlinked bands available, versions include:
Hypermobility Spectrum Disorder Ehlers Danlos Awareness Marfan Syndrome... Stickler Syndrome Pseudoxanthoma Osteogenisis Imperfecta
Made from Silicone, new HSD and EDS wristbands have a metal clip on the black band, securing the interwining bands.
Available in standard sizes only (20cm circumference) You can find them here: https://buff.ly/2NPPppt
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Our theme this month is exercise - which in this heat is quite difficult(!), although I guess our children exercise much more naturally than us adults.
Any kind of sports used to be ok for my daughter, but as soon as her hormones hit at 9 years old, we've hit a period of 18 months of injury from even light exercise, which is such a shame, as we all know what a mood booster exercise can be.
Until she's been assessed and given appropriate supports at RNOH, we have muddled tog...ether to find exercise than she *can* do, and that she enjoys. Swimming is a biggie, she loves it, and is good at it - and has expressed a wish to be a paralympic swimmer for the UK - and what a dream to have! Other than swimming, she also partakes in dance through her drama club.
We are attempting to boost her core strength. A private physio I saw recommended rock climbing for this - she'd love to give it a go, but we haven't found a local club yet. We got my youngest a gym bar for the garden, and they both love hanging and swinging on this.
Pilates is something we still want to try too, and the best thing about this is that we could do it together. We have a local physio/pilates centre that have good knowledge of hypermobility, and they also offer one to one sessions as well as groups.
Another thing we do together is walking, just slow walks, often not very far, and with lots of breaks. We got a dog earlier this year, and he is a fabulous reason to get out of the house when we don't perhaps feel like it.
What other sports/forms of exercise do your little ones enjoy? Do you exercise together?
Lara Compton - Social media volunteer
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Looking for really useful products to help you day to day? We have a great selection in our online shop here: https://buff.ly/2q4MrlR

Factual Thursday - Chiari Malformation & EDS
What is a Chiari malformation?
In some people the lower part of the brain can sit much lower than normal so that it is below the entrance to the skull. This is called a Chiari malformation (CM). It may cause no problem at all, however in this position it can put pressure on the lowest part of the brain and the top of the spinal cord and cause symptoms.
... There are 3 types of CM. Type 1 CM is the most common and the least serious form of the condition. In type 1 CM the lowest part of the back of the brain called the cerebellar tonsils is found to lie at the top of the spinal canal rather than the normal position inside the base of the skull. There may also be tethering of the spinal cord. Here the cord has become abnormally attached within the spine and is less free to move with movement of the spine. There occasionally may also be a syrinx – a fluid filled cavity in the spinal cord or brain stem.
Type 2 and 3 CM are less common. They are more serious. They are associated with a condition called spina bifida, a birth defect of spine development, and a condition called hydrocephalus that describes a build-up of fluid in the brain.
You can find more information about symptoms, diagnosis and treatment on the website: https://buff.ly/2qPymcs
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You may have seen the journal winging its way around, if you are a member of the charity. The volunteer is mailing them out in batches so do not worry if you haven't received yours yet. You should receive it by the end of the month.
The cut off date was to be a member by the end of May, anyone who joined after this date will be able to purchase one later depending on how many are left. We do hope you enjoy it, there is a massive amount of work that goes into these publications for you :)

Do you have a burning question you would like to ask our community and would prefer to remain anonymous? Inbox us starting with #HMSAanonQ followed by your question. We will post a question each Wednesday at 7pm for you :)

Plan your summer entertainment via Give as you Live to entertain the kids during the summer holidays! Lots of things to do including days out at top Theme Parks and Go Ape! or garden games from @ebay and Argos. Everything can be purchased via @Giveasyoulive which will then raise a free donation for us too! #summertime #summerholidays https://buff.ly/2HBrxSE

Last week I spoke about some of the things that I do to help my mental health and keep my mood up, with one of those things being swimming. After 6 weeks away I finally got back into the pool last week and was reminded of how much I love swimming and how beneficial it is for my physical and mental health. However, just days after I started up again a window smashed in the glass ceiling above the main pool, with the pool being shut for at least the rest of this week until it c...an be fixed. It felt frustrating that after 6 weeks away I still couldn't start up again properly.
Another thing that I mentioned was always having something to look forward to and one of those things happened over the weekend. After years of wanting to attend I finally went to Pride in London, but the unbearable heat meant I only lasted a few hours before I had to call it a day. I arrived home exhausted and with an awful headache, so I know I left at the right time but again, it was frustrating.
So I guess I wanted to tie in this post with last weeks, because whilst they are things I can do to help my mental health, sometimes life just throws a spanner in the works and it can be a struggle to balance things out again. It's cliche and for years I hated it but sometimes you really do just have to focus on the good in a situation. Sure, I can't go swimming this week but I know that as soon as I can I'll be ready to jump back in and start working on hitting my personal goals, I'll be more motivated than ever before. Okay so I had to leave Pride quite early but for the time that I was there, I had a ball, maybe the most fun I've ever had! I know that when I look back on these memories I won't remember having to leave early, I'll just remember how much I smiled and enjoyed myself, so I'm trying to speed that process up a little by making that the memories I focus on now!
Do you have any tips to share about how you deal with life when things don't quite go the way you'd hoped?
- Shona (HMSA Marfan Ambassador)
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It's #SelfCareSunday! Sorry for the delay in getting this post up. The heat is seriously causing a lot of us problems. Those with autonomic problems will need to be extra kind to themselves. Extra fluids etc. Our furbaby is really struggling in the heat too :( I'm.taking my cue from her, if it's too much for her, it's too much for me in this heat!
Hope you are all doing ok, keeping up with fluids and coping :) Kim

Become a HMSA member today and get these fab benefits listed below! Also, until the 10th July, you will be automatically entered into a prize draw! Details here: https://buff.ly/2Mgvoqo
A 'New member' pack which includes: 2 group posters, 2 x 'What's the connection?' posters, 4 x trifold leaflets, 1 x 'Living Well WIth Hypermobility' booklet, membership card, and a membership letter. A family pack also includes a 'An Educator's Guide to the Hypermobile Child' booklet and extr...a membership cards.
Access to your nearest local HMSA support group(s), run by trained volunteers
Access to your nearest locally run Facebook groups (secure places to ask questions and gain valuable peer support, moderated by trained volunteers)
1:1 advice from trained staff.
Advocacy is offered on a case by case basis. (This is not a guaranteed service as it depends on staff time and also proof of diagnosis via a medical letter.)
Monthly HMSA E-Newsletter and 2 HMSA Journals, published bi-annually; in each issue we have articles written by our Medical Advisors and other members of the association, keeping our members informed of current progress in the world of Hypermobility Syndromes.
Educational Support Facebook group run by professionals for parents to get advice on accessing the support available to their child.
10% Discount to all HMSA members when hiring products through Wheelfreedom the UK's leading wheelchair hire and mobility scooter hire company.
10% Discount to all HMSA members when purchasing ergonomic tools, aids and assistive devices through buff.ly/2KB4U6B.
Joins us today here: https://buff.ly/2xu3Vzd
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My eldest met her new teacher yesterday, I must admit, it's made me feel quite nervous - having to go through all of her needs again in September. And she'll be in Year 6, so we'll have to tackle the residential too.
These are only my fears, my daughter is as happy as Larry - so we must be doing something right.
She has a care plan, which is up to date, and I'll definitely be ordering some more of the HMSA booklets for educators, particularly, as now our youngest has been dia...gnosed with hypermobility by my GP too - we already knew of course, it's just formal now.
Both girls got glowing reports, and what struck me is their determination to keep going, despite the odds. I'd imagine that most of our children and young people come under that bracket, as do we as parents. Sometimes, I think we all play down this determination, as it becomes our normal - but I'd like to recognise it, in all of us today - well done all of you for keeping going through pain, injuries, exhaustion, hospital appointments, disappointments, and so much more!
And for now, we are going to continue counting down the days until we can turn off our alarms!! 13 sleeps for us! Woohoo!!
- Lara Compton - Social media volunteer
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‘It is great to welcome Dr Bull to the board. His governance experience and knowledge base developed throughout his NHS career will be a significant benefit for the HMSA, as it moves forward with its plans for the next 5 years. Fantastic news!’ - Donna Wicks CEO
I am sure you will join us in welcoming Dr Phillip Bull as a new trustee!
https://buff.ly/2zi0JHG

Factual Thursday - POTS & Hypotension
What are the common symptoms?
One of the most common concerns is the sensation of feeling dizzy or faint, or even passing out. This happens most often when an individual changes position, sitting from lying, standing from sitting etc. It is due to a drop in the blood pressure. We call this Orthostatic Hypotension (OH) or Orthostatic Intolerance (OI).
... A similar problem, often relating to change in posture is palpitations. Here, the heartbeat is much faster (Postural Orthostatic Tachycardia Syndrome (POTS)), and sometimes one can also experience shortness of breath and chest pain. One might experience both the fast heart beat and the drop in blood pressure.
Some people also experience abdominal symptoms such as bloating and pain. This may be associated with a change in bowel habit that fluctuates between constipation and diarrhoea. This may be due to mechanical problems in the bowel or to autonomic problems.
Many will also feel fatigued, experience headaches, blurred or ‘tunnel vision’, and notice difficulty with their ability to concentrate (so-called ‘brain fog’).
Temperature regulation can also be affected. One can feel inappropriately hot or cold, experience flushing / redness of the skin, excessive sweating, or even lose the ability to sweat.
You can find more information on the website: https://buff.ly/2lSxUrY
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Todays Anonymous Question: #HMSAanonQ
I have been told by a podiatrist that I am hypermobile. I do struggle with pain in my joints and I am always tired. Do I need to get a proper diagnosis? How do I go about this?
HMSA Answer: If your symptoms are being addressed by the podiatrist then you may not need a diagnosis, however if you have symptoms they can’t address it is worth seeing your GP for more advice. In most cases, symptoms can be managed well by a GP.
... If the condition becomes more complex i.e comorbities arise, then getting a referral to see a rheumatologist or specialist will be the way to go.
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Book your tickets and buy all your festival essentials online via @GiveasyouLive & you'll generate FREE funds for us too > https://buff.ly/2Ia4zm2 #festivalseason

i would be alot worse off if it wasnt for this association, the forums have been a massive help and also its nice not to feel alone :)

Would never have joined all the pieces together to realise why I hurt so much. It's down to the HMSA that I found where to go to get diagnosed and advice. They have been there for advice and support and still there now. I know I can trust that I will always get the best support and advice from the HMSA. Now my 2 children have been diagnosed and the recent family programme run for the children and parents/carers I believe was fab. Unfortunately my youngest had just come out of hospital so my older one went with a friend and her mum).

When I joined EDSIII it was a real eye opener! I am 68 and now I realise why this elderly Zebra has spent a lifetime of pain, never been away from the doctor, the dentist and hospital. Thank you JHS you have explained it all, I am so relieved to finally understand. I know I am luckier than many as I'm strong willed if not so strong in body. Bless you for all the wonderful work you are doing so others don't suffer like I have.

Unbelievable charity, allowed me to keep my sanity following my diagnosis. The information provided on the website and through the facebook pages have been invaluable to me. I can't thank the volunteers of this charity enough, for all the info and support I have received. I have also bought from the website and received all orders and always had communication from them too. Thanks again . :)

This web site is fantastic for information. I have been using it since I got my diagnosis 4 years ago. It was recommended by the consultant that I went to see recently.

This page and this association made me realise I wasn't alone. It's a life line which helped pull me from a dark place and made me open my eyes to the world again. It gives you the support you so greatly need when feeling isolated and alone because of one or more of these conditions.

This is an amazing charitable organisation, which is always available with up to date information about any of the HMSA disorders.

The HMSA is a wonderful community. Lots of support and reliable information available. It benefits from being an umbrella organisation for all of the disorders that cause hypermobility, and it is well respected by patients and doctors.

The HMSA has literally changed my life, I really can't thank them enough for all they do. I have made some brilliant and hopefully lifelong friends, learned a lot about managing my own condition, and learned to feel comfortable with my wheels. The staff and volunteers all go that extra mile for the charity!

Really helpful and supportive! Love the LiveOT sessions. This group has provided me with the most accurate and relevant information and support than any other place.

Provides great help and support as well as raising awareness of this condition

My go to place when Im struggling to accept what I have, or I have questions. I can guarantee I will always feel better. The HMS calling cards and jokes they used to do always make me laugh and smile too :-) I cant make the groups but this is the very best next thing. Keep up the good work, and thank you x

I'm going to tell you I think about the hypermobility Association they are amazing they are awesome they are great people just going to enroll the whole family in on family membership and this is where the fun begins I'm going to work hard to make sure so many people are aware that this illness / disability is recognised my daughter she looks normal people have no idea what lies beneath so Time to do some volunteering and some serious fundraising

I love the information and the support of this association! It has been a great help in rural America were not a lot people or docs understand the syndrome.

I live in the states, and I value this page as a resource. I've been lucky enough to have "anonymous questions" posted on my behalf, and I've learned so much from others posting, as well. Thank you for running such a great page!

Bedrock of quality medical information and fantastic support

Amazing organization. Equally amazing leadership and volunteers. A wealth of information on the HMSA site. Always willing to support and help not only patients, but other organizations. Love working with everyone at HMSA!

A great charity and very informative group. Provides support and information as well as local meet up groups.

Nice page!!!!!!

i would be alot worse off if it wasnt for this association, the forums have been a massive help and also its nice not to feel alone :)

Would never have joined all the pieces together to realise why I hurt so much. It's down to the HMSA that I found where to go to get diagnosed and advice. They have been there for advice and support and still there now. I know I can trust that I will always get the best support and advice from the HMSA. Now my 2 children have been diagnosed and the recent family programme run for the children and parents/carers I believe was fab. Unfortunately my youngest had just come out of hospital so my older one went with a friend and her mum).

When I joined EDSIII it was a real eye opener! I am 68 and now I realise why this elderly Zebra has spent a lifetime of pain, never been away from the doctor, the dentist and hospital. Thank you JHS you have explained it all, I am so relieved to finally understand. I know I am luckier than many as I'm strong willed if not so strong in body. Bless you for all the wonderful work you are doing so others don't suffer like I have.

Unbelievable charity, allowed me to keep my sanity following my diagnosis. The information provided on the website and through the facebook pages have been invaluable to me. I can't thank the volunteers of this charity enough, for all the info and support I have received. I have also bought from the website and received all orders and always had communication from them too. Thanks again . :)

This web site is fantastic for information. I have been using it since I got my diagnosis 4 years ago. It was recommended by the consultant that I went to see recently.

This page and this association made me realise I wasn't alone. It's a life line which helped pull me from a dark place and made me open my eyes to the world again. It gives you the support you so greatly need when feeling isolated and alone because of one or more of these conditions.

This is an amazing charitable organisation, which is always available with up to date information about any of the HMSA disorders.

The HMSA is a wonderful community. Lots of support and reliable information available. It benefits from being an umbrella organisation for all of the disorders that cause hypermobility, and it is well respected by patients and doctors.

The HMSA has literally changed my life, I really can't thank them enough for all they do. I have made some brilliant and hopefully lifelong friends, learned a lot about managing my own condition, and learned to feel comfortable with my wheels. The staff and volunteers all go that extra mile for the charity!

Really helpful and supportive! Love the LiveOT sessions. This group has provided me with the most accurate and relevant information and support than any other place.

Provides great help and support as well as raising awareness of this condition

My go to place when Im struggling to accept what I have, or I have questions. I can guarantee I will always feel better. The HMS calling cards and jokes they used to do always make me laugh and smile too :-) I cant make the groups but this is the very best next thing. Keep up the good work, and thank you x

I'm going to tell you I think about the hypermobility Association they are amazing they are awesome they are great people just going to enroll the whole family in on family membership and this is where the fun begins I'm going to work hard to make sure so many people are aware that this illness / disability is recognised my daughter she looks normal people have no idea what lies beneath so Time to do some volunteering and some serious fundraising

I love the information and the support of this association! It has been a great help in rural America were not a lot people or docs understand the syndrome.

I live in the states, and I value this page as a resource. I've been lucky enough to have "anonymous questions" posted on my behalf, and I've learned so much from others posting, as well. Thank you for running such a great page!

Bedrock of quality medical information and fantastic support

Amazing organization. Equally amazing leadership and volunteers. A wealth of information on the HMSA site. Always willing to support and help not only patients, but other organizations. Love working with everyone at HMSA!

A great charity and very informative group. Provides support and information as well as local meet up groups.

Nice page!!!!!!

i would be alot worse off if it wasnt for this association, the forums have been a massive help and also its nice not to feel alone :)

Would never have joined all the pieces together to realise why I hurt so much. It's down to the HMSA that I found where to go to get diagnosed and advice. They have been there for advice and support and still there now. I know I can trust that I will always get the best support and advice from the HMSA. Now my 2 children have been diagnosed and the recent family programme run for the children and parents/carers I believe was fab. Unfortunately my youngest had just come out of hospital so my older one went with a friend and her mum).

When I joined EDSIII it was a real eye opener! I am 68 and now I realise why this elderly Zebra has spent a lifetime of pain, never been away from the doctor, the dentist and hospital. Thank you JHS you have explained it all, I am so relieved to finally understand. I know I am luckier than many as I'm strong willed if not so strong in body. Bless you for all the wonderful work you are doing so others don't suffer like I have.

Unbelievable charity, allowed me to keep my sanity following my diagnosis. The information provided on the website and through the facebook pages have been invaluable to me. I can't thank the volunteers of this charity enough, for all the info and support I have received. I have also bought from the website and received all orders and always had communication from them too. Thanks again . :)

This web site is fantastic for information. I have been using it since I got my diagnosis 4 years ago. It was recommended by the consultant that I went to see recently.

This page and this association made me realise I wasn't alone. It's a life line which helped pull me from a dark place and made me open my eyes to the world again. It gives you the support you so greatly need when feeling isolated and alone because of one or more of these conditions.

This is an amazing charitable organisation, which is always available with up to date information about any of the HMSA disorders.

The HMSA is a wonderful community. Lots of support and reliable information available. It benefits from being an umbrella organisation for all of the disorders that cause hypermobility, and it is well respected by patients and doctors.

The HMSA has literally changed my life, I really can't thank them enough for all they do. I have made some brilliant and hopefully lifelong friends, learned a lot about managing my own condition, and learned to feel comfortable with my wheels. The staff and volunteers all go that extra mile for the charity!

Really helpful and supportive! Love the LiveOT sessions. This group has provided me with the most accurate and relevant information and support than any other place.

Provides great help and support as well as raising awareness of this condition

My go to place when Im struggling to accept what I have, or I have questions. I can guarantee I will always feel better. The HMS calling cards and jokes they used to do always make me laugh and smile too :-) I cant make the groups but this is the very best next thing. Keep up the good work, and thank you x

I'm going to tell you I think about the hypermobility Association they are amazing they are awesome they are great people just going to enroll the whole family in on family membership and this is where the fun begins I'm going to work hard to make sure so many people are aware that this illness / disability is recognised my daughter she looks normal people have no idea what lies beneath so Time to do some volunteering and some serious fundraising

I love the information and the support of this association! It has been a great help in rural America were not a lot people or docs understand the syndrome.

I live in the states, and I value this page as a resource. I've been lucky enough to have "anonymous questions" posted on my behalf, and I've learned so much from others posting, as well. Thank you for running such a great page!

Bedrock of quality medical information and fantastic support

Amazing organization. Equally amazing leadership and volunteers. A wealth of information on the HMSA site. Always willing to support and help not only patients, but other organizations. Love working with everyone at HMSA!

A great charity and very informative group. Provides support and information as well as local meet up groups.

Nice page!!!!!!

i would be alot worse off if it wasnt for this association, the forums have been a massive help and also its nice not to feel alone :)

Would never have joined all the pieces together to realise why I hurt so much. It's down to the HMSA that I found where to go to get diagnosed and advice. They have been there for advice and support and still there now. I know I can trust that I will always get the best support and advice from the HMSA. Now my 2 children have been diagnosed and the recent family programme run for the children and parents/carers I believe was fab. Unfortunately my youngest had just come out of hospital so my older one went with a friend and her mum).

When I joined EDSIII it was a real eye opener! I am 68 and now I realise why this elderly Zebra has spent a lifetime of pain, never been away from the doctor, the dentist and hospital. Thank you JHS you have explained it all, I am so relieved to finally understand. I know I am luckier than many as I'm strong willed if not so strong in body. Bless you for all the wonderful work you are doing so others don't suffer like I have.

Unbelievable charity, allowed me to keep my sanity following my diagnosis. The information provided on the website and through the facebook pages have been invaluable to me. I can't thank the volunteers of this charity enough, for all the info and support I have received. I have also bought from the website and received all orders and always had communication from them too. Thanks again . :)

This web site is fantastic for information. I have been using it since I got my diagnosis 4 years ago. It was recommended by the consultant that I went to see recently.

This page and this association made me realise I wasn't alone. It's a life line which helped pull me from a dark place and made me open my eyes to the world again. It gives you the support you so greatly need when feeling isolated and alone because of one or more of these conditions.

This is an amazing charitable organisation, which is always available with up to date information about any of the HMSA disorders.

The HMSA is a wonderful community. Lots of support and reliable information available. It benefits from being an umbrella organisation for all of the disorders that cause hypermobility, and it is well respected by patients and doctors.

The HMSA has literally changed my life, I really can't thank them enough for all they do. I have made some brilliant and hopefully lifelong friends, learned a lot about managing my own condition, and learned to feel comfortable with my wheels. The staff and volunteers all go that extra mile for the charity!

Really helpful and supportive! Love the LiveOT sessions. This group has provided me with the most accurate and relevant information and support than any other place.

Provides great help and support as well as raising awareness of this condition

My go to place when Im struggling to accept what I have, or I have questions. I can guarantee I will always feel better. The HMS calling cards and jokes they used to do always make me laugh and smile too :-) I cant make the groups but this is the very best next thing. Keep up the good work, and thank you x

I'm going to tell you I think about the hypermobility Association they are amazing they are awesome they are great people just going to enroll the whole family in on family membership and this is where the fun begins I'm going to work hard to make sure so many people are aware that this illness / disability is recognised my daughter she looks normal people have no idea what lies beneath so Time to do some volunteering and some serious fundraising

I love the information and the support of this association! It has been a great help in rural America were not a lot people or docs understand the syndrome.

I live in the states, and I value this page as a resource. I've been lucky enough to have "anonymous questions" posted on my behalf, and I've learned so much from others posting, as well. Thank you for running such a great page!

Bedrock of quality medical information and fantastic support

Amazing organization. Equally amazing leadership and volunteers. A wealth of information on the HMSA site. Always willing to support and help not only patients, but other organizations. Love working with everyone at HMSA!

A great charity and very informative group. Provides support and information as well as local meet up groups.

Nice page!!!!!!