#REDS4VEDS DAY

On Friday 18th May 2018 during EDS awareness month we are hosting the annual global awareness campaign #REDS4VEDS to raise awareness of vascular EDS.

 

The campaign asks social media users to post a photo of themselves wearing the colour red in support of VEDS awareness. In 2015 the launch was a huge success reaching out to over 500,000 social media users on Twitter, Facebook and Instagram.

 

REDS4VEDS Day is now an annual awareness event which takes place on the third Friday of May.

Manx landmarks such as the Tower of Refuge were illuminated bright red on Friday for vascular Ehlers Danlos Syndrome (vEDS) day.

 

It was a vivid display for a rare and life limiting condition, which affects 220 people in Britain. In it, malformation of collagen makes all tissues, arteries and internal organs extremely fragile and patients are at risk of sudden arterial or organ rupture.

Far less visible than this vivid light display are the symptoms of this complex disease. This creates different problems, said Port Erin woman Emma Watterson whose daughter Levi-Rose was diagnosed in September 2017.

Apart from very flexible thumbs (severe hyper mobility as part of her vascular EDS, Levi-Rose looks like any normal, bright-eyed three-year-old.

But she bruises very easily and the condition leads to chronic fatigue. The increased risk of bleeding and damage to her organs means Emma must be very vigilant and protective of her little girl.

The bruising made Emma ’completely paranoid’ before Levi-Rose received her diagnosis.

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Awareness Poster:

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REDS4VEDS 2016

  

A Manchester based, rare disease charity, Annabelle’s Challenge are launching a worldwide social media campaign this May as part of the 2016 EDS awareness month. The charity raises awareness of Vascular EDS (VEDS). The condition life threatening, sub type of Ehlers Danlos Syndrome.

 

On Friday, May 20, the #reds4veds campaign asks social media users to post a picture of themselves wearing the colour red in support of VEDS awareness. Don’t forget to put #reds4veds when posting!

 

In it’s second year, Annabelle’s Challenge has teamed up with Irish EDS&HMS for this campaign. Both organisations are also working closely with all the EDS support groups and charities across Europe, US, Canada and Africa for the event.

 

“Last year’s campaign was a massive success. I am especially delighted to be working with such a fantastic charity as Annabelle's Challenge for a second year. The Griffin family does tremendous work in raising awareness about this awful condition. Sadly, it is extremely under diagnosed, we want this to change so that sufferers can have a better quality of life,” says Irish, EDS sufferer, Yvonne Evans-Nevin who campaigns in Ireland for the annual #reds4veds event.

 

Annabelle's father and founder of Annabelle's Challenge, Jared Griffin says:

 

“We are delighted that #reds4veds day is back for its second year following the amazing response to the launch in May 2015. The interaction across the globe was astounding last year with so many individuals being creative and sharing their photos on social media. #reds4veds will continue as an annual awareness event for Vascular EDS. We encourage as many people to get involved and wear something red on May 20."

REDS4VEDS 2015

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