What is Vascular EDS?

Annabelle's Challenge is the leading charity for Vascular Ehlers-Danlos Syndrome in the UK.

 

At the heart of the charity is Annabelle, a brave girl from Bury who is the inspiration behind our challenge to raise awareness and support for patients and families touched by vascular EDS.

 

Our Challenge To Find Your Cure 

  

Vascular EDS is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at risk of sudden arterial or organ rupture. Vascular EDS (previously known as EDS Type IV) is a rare type of Ehlers-Danlos syndrome caused by an alteration, also known as a mutation in the COL3A1 gene. 

 

COL3A1 gene is the instruction for making collagen type III a tough fibre-like protein that makes up a third of our body protein. When this gene is altered, it causes a lack or deficiency of this collagen making the connective tissue less effective, particularly in skin, lung, uterus, intestine and the vascular system.

 

Because many individuals with vascular EDS (vEDS) are identified only after a severe complication or death, it is likely it did not come to medical attention and therefore goes undetected.

 

The median life expectancy for those diagnosed with vascular EDS is 51 and the prevalence is an estimated 1:250,000.       

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An early diagnosis is critical to ensure that appropriate preventative measures are taken through medical testing and monitoring.

 

One of our priorities is to reduce the number of children and adults being undiagnosed or misdiagnosed by increasing awareness to the public and medical profession.

 

Annabelle's Challenge is proud to be an official partner of MedicAlert UK enabling our charity to provide a FREE annual subscription and discounts on MedicAlert UK jewellery exclusively for our vascular EDS members.

 

Helpline: 0161 207 8337

 

For support and advice please call our helpline available Monday to Friday from 9am - 6pm, alternatively you can contact our charity through facebook and twitter.

Our aims: Education - Research - Support

Education: To advance the education of the general public and medical profession in all areas relating to vascular Ehlers-Danlos syndrome.

 

Research: The relief of sickness and preservation and protection of good health by the provision of funding for the development of research and early diagnosis of vascular Ehlers-Danlos syndrome.

 

Support: To promote and protect the physical and good mental health of sufferers of vascular Ehlers-Danlos syndrome through the provision of financial assistance, support, education and practical advice.

How can we help you today?

Our Challenge To Find Your Cure

I Need Support

Free Membership

Free Medic Alert

Latest news & updates

UK's first ever vascular EDS conference

Annabelle's Challenge and The Ehlers-Danlos Support UK will be jointly hosting the first ever UK Vascular EDS Conference on Saturday 6th and Sunday 7th May 2017.

Annabelle's Challenge needs you!

We need more help than ever and our volunteers are crucial in helping us deliver our charitable aims. Join us today & help make a real difference to vascular EDS.

Great Gatsby Ball

We are delighted to announce tickets are now sale for our Great Gatsby Ball on Saturday 1st April at the Village Hotel Bury.

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© Copyright 2013-2017 Annabelles Challenge. UK Registered Charity No.1157074 Tel: 0161 207 8337 Email: info@annabelleschallenge.org