Latest News

Nottingham Craft and Holistic Fayre success!

Posted By HMSA Social Media Coordinator, October 18, 2017

Wendy Turner who is the group leader for Nottingham organised and ran a wonderful event on Sunday the 15th October. The event consisted of craft stalls and holistic stalls.

Wendy says:
‘The total made at the Nottingham Craft and Holistic Fayre was ……..drum roll …..£1073.63!!!! I am absolutely gobsmacked as that has doubled what I had hoped for! One very happy bunny here!!!’

As a very small charity, all fundraising monies are greatly received, so we can continue our work of raising awareness with professionals and the public and supporting everyone who needs it and much more.

Wendy, you are a legend! Thank you so much to you and everyone involved in organising and helping the event become a success! 💜

Conclusion of Keith Diaper’s fundraising event (Ironcause)

Posted By HMSA Social Media Coordinator, October 16, 2017

Last Saturday evening was the concluding fundraising event for Keith Diaper (Ironcause).

It was a privilege to drop in on the evening event and to see how many people had turned out to support Keith and his wife Pippa.

Keith has raised over £5000 for the HMSA. But perhaps more importantly he has raised the profile of the charity and the conditions it supports.

We know that it takes over 55% of our people ten years plus to gain a correct diagnosis.
This 10 year journey sees this (our!) population dismissed by medical professionals, who have no understanding or little knowledge, of what can be complex and multi-systemic conditions.

Delays in diagnosis can lead to a negative impact on education or employment, family and friend relationships, and more potential for disability.

Patients are often labelled as neurotic or having psychosomatic issues. Depression and anxiety is high for these people for a whole host of valid reasons and certainly it isn’t helped by repeatedly being told there is nothing wrong with you, yet you experience high levels of persistent pain and chronic fatigue, dislocations and soft tissue injuries, gastrointestinal and autonomic dysfunction symptoms etc.

Keith undertook 52 mid-triathalons over a 26 week period. He completed a whopping 3655 miles and he is still standing! We are very grateful to Keith for his hard work and to Pippa for the continued support she provided to the cause. A special thank you to their lovely daughter who gave up 26 weeks of ‘Daddy time’. I have a sneaky suspicion that this little lady is aiming to take up her Dad’s sport!

The money Keith has raised will go towards our information production and will form part of a campaign we are running from the end of November.

The ‘Giving GPs the Tools’ campaign will allow us to send each GP practice in the UK a package of information on the conditions we support, along the following lines;

the different hypermobility related syndromes/disorders,
when to refer,
when they can make diagnosis themselves,
signposting information for patients to the HMSA,
accessing HMSA professional resources,
accessing our training courses for professionals,
accessing The Kent Model,
accessing the professional network in their area.

So instead of sending Christmas cards to the HMSA, family and friends, why not save up and contribute to the campaign when it is live at the end of November?

I know Keith and Pippa intend to keep raising awareness of both the HMSA and the conditions we support in the future. And I am looking forward to meeting them both again soon.

Join the HMSA, Keith and Pippa, and those who have already donated and support the ‘Giving GPs the Tools’ campaign.

It will make a difference to those of you already diagnosed and those who remain undiagnosed today!

Ironcause – fundraiser Keith Diaper’s final push this weekend!!!

Posted By HMSA Social Media Coordinator, September 22, 2017

Event 50 of 52 3515+ miles challenge miles covered just 140.6 to go! Good luck for the last remaining miles to go Keith! You are a superstar, thank you for everything you are doing 🙂

Helpless!

I will never forget the night Pippa was rushed into hospital bleeding and in excruciating pain, which had suddenly come on out of nowhere. It was a very hard night which lead to a very frustrating week, with Pippa in isolation and undergoing lots of test. Finally after a week she was allowed home but there was no diagnosis to what had caused this scary event. As a husband I felt helpless.

 

We spent the next 3 years going from one specialist to another, all of which had different ideas. Meanwhile, Pippa was starting to struggle with major fatigue and joint pain on a regular basis. After about 18 months had passed a diagnosis of fibromyalgia was made and to be fair to the health professionals some of the symptoms are very similar, however not all!

 

The next 18 months would be full of appointments, where nothing was really working or adding up. This was a very difficult time for us all. Finally after we kept questioning the decision and seeing yet another specialist, Pippa was finally diagnosed with Ehlers- Danlos Syndrome. We went home and did lots of research. This conditions ticked off all the symptoms that Pippa suffers with.

 

We came across the Hypermobility Syndromes Association website. This charity really helped us begin to understand what we were dealing with. We loved the fact they not only carry out research, they have support groups and information packs for not only the person with the condition but other family members too. They also carry out work educating healthcare professionals.

 

There currently isn’t a cure for Ehlers- Danlos Syndrome and what the future holds for Pippa is unknown. However there is a good chance she will end up in a wheelchair at some point. But whatever happens I know Pippa won’t let this condition define who she is. She is an amazing wife, mother and teacher. She continues to battle everyday, never letting her pain, dislocations or fatigue beat her. Unfortunately there is a 50% chance that Isabella will have the condition too, but she is as strong willed as her mother, so I have no doubt she will tackle it head on.

 

We came up with this challenge to help raise awareness for the condition and to assist the charity with their vital work. We don’t want other families going through the 3 years of upset that we went through. The last thing we want is sympathy or pity and we know everyone has their own issues behind closed doors. All I’m asking for is your support, as I mentioned in a previous post, I will continue to raise awareness for the HMSA but I won’t be pestering you for donations again. You have all been amazingly generous over the past 10 years and I am so thankful. If I could ask you if you could make a donation one last time, we would be so grateful. Please help us reach this last target, every penny helps.

 

www.ironcause.co.uk/donate

Last few remaining day tickets released! HMSA & EDS UK conference

Posted By HMSA Social Media Coordinator, September 19, 2017

If you would like a DAY TICKET for the HMSA & EDS Support UK Management and Wellbeing Patient Conference, the last few remaining day tickets become available today! The tickets are available to both members and non members (If you are a medical professional who would like to attend, please do not hesitate to contact us). If you would like to view more information on these, or the event itself, please https://www.eventbrite.co.uk/e/management-and-wellbeing-con… (NB, the images used in this post are taken from past HMSA conferences at a different venue and are included for illustrative purposes only)

Fundraising Content Creator – Volunteers needed!

Posted By HMSA Social Media Coordinator, September 9, 2017

Our fundraising team of Kate and Hannah are doing an amazing job of looking after our fundraisers but they really need some more help so that the HMSA can support all the people that raise funds for us.

We are looking for people who can fill the posts of “Fundraising Content Creators”

In plain English we are looking for people who can create posts which we can use across our social media platforms which will:

•Create awareness of forthcoming events providing publicity to maximise funds raised.

•Keep our followers informed as the event takes place, for example regular updates throughout the London marathon so we could track the progress of our runners

•A follow up post after the event with pictures thanking our fundraiser and giving the total of money raised

As part of our volunteer program we provide ongoing support and training where needed and volunteering has lead to new career opportunities for many of our past and present volunteers.
If you would like any more information and an informal chat about what we can offer, please email our volunteer coordinator on Brenda@hypermobility.org


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.