Vascular EDS helpline: 0800 917 8495
Annabelle's Challenge is the UK's leading charity for Vascular Ehlers-Danlos Syndrome working with the NHS EDS National Diagnostic Service.
At the heart of the charity is Annabelle who is the inspiration behind "Our Challenge To Find Your Cure" raising awareness and support for patients and families touched by vascular EDS.
Annabelle's Challenge are proud recipients of The Queen's Award for Voluntary Service, The MBE for volunteer groups.
We also host the annual global awareness campaign REDS4VEDS Day which takes place on the third Friday of May.
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 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.
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