My name is Cara (32) and I live in Bristol, England with my partner Richard (35). We both suffer from a rare inheritable connective tissue disorder called Hypermobility Syndrome (HMS) otherwise known as Ehlers Danlos Syndrome - Hypermobility Type (EDS). In February 2012 I was appointed as a Social Media Coordinator for the Hypermobility Syndrome Association.

The purpose of this this site is to inform people who may have Hypermobility Syndrome, provide a wider understanding of the condition to our visitors and help sufferers’ friends and family to understand the complexities of living with this disorder. My aim is also to promote fundraising activities for UK Charities that support people with Hypermobility Syndrome and Ehlers Danlos Syndrome.

Saturday, 29 June 2013

Vote for the HMSA in the Big Break for Charities this Weekend

The Direct Debit website have a scheme which runs until the end of June. They are giving away £5,000 a month from March until June to UK charities, and your votes will decide how the money is divided up. Every month we will ask YOU the public – to vote.

The good cause with the most votes each month will receive £2,000, the runner up £1,000 and the remaining £2,000 will be divided equally amongst the 8 runners up.

The Hypermobility Syndrome Association have been chosen as one of the 100 causes this month. We need to come in the top 10 by the end of June to receive a minimum of £250. With your help you can make this possible.

VOTING
If you are a Facebook or Google account user vote at our page HERE

Life in the fast lane working to help people with Hypermobility Syndrome

Hi Everyone,

The past year or so has been so manic. Back in February last year I was appointed as a Social Media Coordinator for the Hypermobility Syndrome Association (HMSA). They are a UK based charity that support people worldwide with those living with Hypermobility Syndromes. It has been fantastic working with the HMSA and seeing how much support and following the charity is getting online. I have very busy with promoting the HMSA on all social media platforms including Facebook, Twitter, Pinterest and the HMSA website.

There has been a huge amount of progress for HMS and EDS in the past year as there has been so much featured about it in the media and awareness is growing online so quickly it's tough to keep up! I hope to spend some time getting this blog back up to speed and hope to give it a new look soon. So watch this space.

Cara

Wednesday, 29 February 2012

Rare Disease Day 2012: How to Get Involved.



February 29, 2012 marks the fifth international Rare Disease Day. On this day hundreds of patient organisations from more than 50 countries worldwide are organising awareness-raising activities converging around the slogan "Rare but strong together".

Today is Rare Disease Day. It's a great opportunity to get involved with the day and help raise awareness of Hypermobility Syndrome. You can do this by doing the following:

1. Watch and share the official Rare Disease Day video www.rarediseaseday.org/solidarity.
Also read about the stars of the video including Jamie's story, he has Ehlers Danlos Syndrome Hypermobility Type.

2. Register as a ‘Friend of Rare Disease Day’ on our website and ask your partners to do the same! Almost 300 people have signed up already!

3. “Tell your story” about yourself or someone you know who is living with a rare disease. Upload a photo or a video to www.rarediseaseday.org/yourstory/photo.

4.  Join Rare Disease Day Facebook group.

5.  Follow Rare Disease Day on Twitter.

6.  Remember that the theme of this year’s campaign is “Solidarity” and the slogan is “Rare but strong together!” For more information on how to download the logo and other communication material, go to www.rarediseaseday.org.

It's not too late to get involved if you read this post after Feb 29th.  You can still take part and do as many as the above points as you like.

Lets all come together for Rare Diseases Day around the World.

Friday, 28 October 2011

EDS UK Fashion Show Fundraiser

Sunday 6th November 2011, 3 - 6pm
Foundation Bar, Covent Garden, London


An exclusive Fashion Show featuring Models with Ehlers Danlos Syndrome. Raising funds and awareness for sufferers of Ehlers Danlos Syndrome. Tickets are £25 and include the following:

*A Glass of Champagne on arrival.
*Afternoon Tea being served throughout the event. Including: Tea, Coffee, Soft drinks, sandwiches, cakes, biscuits, cupcakes, eclairs and more!

EDS UK will be selling their literature and merchandise including their new wristbands, T Shirts and medical cards. There will be a number of stalls including: Dolly Dinky jewellery who has been styling the X Factor Finalists, Cazcarra Cosmetics, bags, notebooks, and various other gift and clothing goods.

The day is being hosted by The Very Simon G who has just been voted the Cosmopolitan male fashion blogger of the year. They have signed goodies from celebrities and TV Shows amoungst other amazing raffle prizes and goody bags.

Buy your Tickets Here

Thursday, 27 October 2011

Russell Kane - His Hypermobile Joints & Stretchy Skin on TV

The British Comedian Russell Kane has mentioned being double jointed and demonstrated his stretchy skin on a number of UK TV Shows recently including the following:

Daybreak – 08/09/11 on ITV1
Watch Here on ITV Player
Ref Point: 1:30 to 2:08

8 out of 10 Cats – 19/7/08/11 on Channel 4
Watch Here on 4oD
Ref Point: 19:34 to 19:50

Transcript I took from the Daybreak Interview:

After not getting his luggage back yet after just returning from holiday, Adrian Chiles: "What are you missing?" Russell Kane: “One of the main problems is I’ve got no foot arches. So I’m dependant on my foot arches. I left them in my luggage so I’ve got 2 days till I can walk!” He shows his cursed wedding shoes (from his failed wedding); he does this by pulling his leg up to his lap to show off the shoes to the camera. Adrian: “You're ever so bendy!” Russell: “I’m double jointed, that’s what the flat feet are related to. It’s also stretchy skin, look at this” He stretches the skin on his face, freaking out the production team, Just before that he briefly shows his hypermobile hands for a moment.

A couple of months ago I followed Russell Kane on Twitter (@Russell_Kane). I was surprised when I tweeted him to ask it he was hypermobile and he replied “yes”. Russell is a daily user of Twitter and it’s great that he frequently replies back to his fans. He is busy touring the UK at the moment with his Manscaping Tour. Hopefully his frequent mentions on TV of being hypermobile and stretchy skin have prompted many viewers to Google about these attributes. This would inevitably lead to web pages about Hypermobility and Ehlers Danlos Syndrome, hence spreading awareness.

To find out more about Russell Kane including his Live Tour Dates visit http://www.russellkane.co.uk/

Wednesday, 26 October 2011

EDS UK News & New Celebrity Patron

EDS UK have been busy since they relaunched with a new name and branding earlier this year.  They now have a new office and helpline that runs Monday to Friday with 2 staff members Lara Bloom, Development Manager and Ellie Moss, Office Administrator.  They have new products available featuring the EDS UK logo including a Medical Alert Card, T Shirts and Wristbands. To purchase any of them get in touch with the office on 0208 736 5604 or email lara@ehlers-danlos.org
Cherylee Houston, EDS UK Patron

In their current edition of Fragiile Links EDS UK announced that they have their First Patron, Cherylee Houston (Coronation Street Actress). She became the first full-time disabled actress on the soap.  The Charity says " Not only is this a fantastic representation for disabled people everywhere, it is even more special for us, as that the disability that Cherylee suffers from, both in the soap, and in real life, is Ehlers Danlos Syndrome."  No doubt this is fantastic opportunity to raise awareness of EDS and raise the profile of the Charity.