Annabelle’s Challenge- Supporting people with Vascular Ehlers Danlos Syndrome

Annabelle’s Challenge was established in January 2013 when Jared’s daughter, Annabelle was diagnosed with Vascular Ehlers Danlos Syndrome (VEDS). At the time, there was very little support for people with this condition and their families. Annabelle’s started their own online support group through Facebook to connect with other people with VEDS and their families.

What is Ehlers Danlos Syndrome?

Ehlers Danlos Syndrome (EDS) is a genetic connective tissue disorder which affects the collagen within the body. A genetic condition is hereditary and is with an individual from birth, but symptoms may not show immediately. There are several types of EDS including hypermobile, classical and vascular.

Find out more about the types of EDS on the EDS UK website.

Vascular Ehlers Danlos syndrome (VEDS) is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people. It is caused by a gene mutation affecting a major protein, which causes weakness in vessel walls and hollow organs.

 Find out more about VEDS including diagnostic criteria on the Annabelle’s Challenge website.

Three Ways that Annabelle’s Challenge supports people with VEDS

1. Ambulance markers

Ambulance markers will alert an ambulance crew that there is a person at that address with a diagnosis of VEDS. This can result in a more specific urgent treatment approach.

2. Facebook group

Annabelle’s Challenge has a private Facebook group for people who have been diagnosed with VEDS.  This group provides peer to peer support, signposting and support from people in similar situations.

3. Regional support groups

Annabelle’s Challenge has regional support groups across the UK to help people with VEDS and their families.

Upcoming Events in Bury

14th and 15th May 2022

Ehlers-Danlos Support UK and Annabelle's Challenge will once again be jointly hosting a VEDS Conference in the UK.

The conference takes place on the weekend of 14th May 2022 at the Village Hotel in Bury, Manchester UK.

The programme includes a mixture of medical presentations from the EDS National Diagnostic Service and an opportunity for patients and families touched by the condition to meet others, share experience and form lasting friendships.

Find out more about this event on the Annabelle’s Challenge Website.