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Annabelle's Challenge is the leading registered 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 the challenge to raise awareness and support for patients and families touched by vascular EDS across the UK and across the globe.

 

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.   

What is Vascular EDS?

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. 

 

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.

How can we help you today?

Our Challenge To Find Your Cure

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.

Family Fun Day raises £2,430

Annabelle's Challenge Family Fun Day is our largest public event to date and raised £2,430 during the well attended event in Clarence Park Bury.

Check out Katie's vlogs coming here soon:

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