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 Ehlers-Danlos 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.

 

At present, the life span for affected individuals is a median age of about 51 years (49 for males and 53 for females) but with a very large range from 10 years to 80 years. The prevelance is estimated as 1/50,000 to 1/200,000.       

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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 jointly hosted the first ever UK Vascular EDS Conference with 50 vEDS patients attending.

EDS National Diagnostic Service

The EDS National Diagnostic Service is a specialist service for individuals & families who are suspected to have complex Ehlers-Danlos syndrome.

Evie awarded top honour in swimming

Meet nine-year-old Evie Woodward who has Vascular EDS and has been awarded a top honour with her swimming.

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