What is Vascular EDS?

How can we help you today?

Our Challenge To Find Your Cure

Annabelle's Challenge is the UK's leading charity for Vascular Ehlers-Danlos Syndrome (vascular EDS) working closely with the NHS Ehlers Danlos National Diagnostic Service.

 

We also promote research and host the annual awareness event REDS4VEDS Day. At the heart of the charity is Annabelle the inspiration behind our challenge to raise awareness and support for patients and families touched by vascular EDS.

 

Freephone Helpline: 0800 917 8495

  

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.   

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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 prevalence is estimated as 1 in 50,000 to 1 in 200,000 people. 

 

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

 

Our primary aim is to reduce the number of children and adults being undiagnosed or misdiagnosed by increasing awareness to the public and medical profession.

 

We also provide an essential helpline for advice and sign-posting to anyone who is concerned with a diagnosis of vascular EDS. Both our charity founders Jared and Sarah are always on hand to offer their support as and when required.

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.

Peel Tower Charity Abseil

The annual Peel Tower Abseil for Annabelle's Challenge takes place on Sunday 10th June. Join us for an amazing day supporting Annabelle's Challenge.

Annabelle's Challenge head to Westminster

Founders Jared and Sarah attend Rare Disease Day reception in Parliament with James Frith MP to discuss concerns and the future plans of the charity

The Leys in memory of Carl George

Annabelle's Challenge receives support from The Leys School in Cambridge in memory of Carl George. Funds raised help us support families with vascular EDS.

REDS4VEDS DAY

Put on the red and let the whole world know on Friday 18th May 2018

Stay in touch

Keep up to date with our news, events and how to get involved 

Proudly supporting the NHS EDS National Diagnostic Service

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© Copyright 2013-2018 Annabelles Challenge. UK Registered Charity No.1157074 Office: 0161 207 8337 Email: info@annabelleschallenge.org