Annabelle was one of the youngest people in the UK to be diagnosed with vascular EDS on December 2012. Vascular EDS is a serious condition that is associated with a risk of sudden death due to arterial or organ rupture at any age.
The aim of the charity is to reduce the number of people being undiagnosed or misdiagnosed by increasing awareness with the public and medical profession.
What is Vascular EDS?
Vascular EDS (previously known as type 4 EDS) is a genetic condition caused by an alteration, also known as a mutation, in a gene called COL3A1. This gene is the instruction for making collagen type III. When this gene is altered it causes a lack or deficiency of this collagen. This leads to disordered packing of collagen fibres making the connective tissue less effective, particularly in blood vessels, hollow organs and the skin.
It is a rare condition and therefore many health professionals will not have seen someone with this diagnosis.
The signs / facial characteristics of this genetic connective tissue (collagen) disorder are NOT being recognised in our children and young adults. As a result, many have lost their lives prematurely. An early DIAGNOSIS is critical to ensure that appropriate preventative measures are taken through medical testing and monitoring.
Facial characteristics: typically small features; thin lips, nose, mouth, narrow palate, deep-set or almond shaped eyes, lobeless ears, fine hair and thin translucent skin with veins and small blood vessels easily seen on chest, abdomen and thighs.
The main aim of Annabelle's Challenge is to raise awareness of this rare but life-changing condition and there are a number of ways you can get involved.
Annabelle's Challenge organise a range of fundraising events throughout the year, including an annual charity ball. Simply visit the website for details of forthcoming events and come along wherever you can to support this great cause.
Businesses in the local area can also get involved - simply contact Sarah for more details using the links above.
Annabelle's Event Hire
Annabelle’s Event Hire is perfect for any occasion so if you’re looking for chair covers, table centre pieces or a magical twinkling back drop they can help! The company have a wide selection of centre pieces including candelabras and giant Martini glasses.
Annabelle’s Event Hire offer chair cover hire for weddings, corporate functions, charity events, private parties & much more; they even offer an amazing kids party package which is ideal for any princess or super hero!
Annabelle’s Event Hire tailor make your special day exactly how you have imagined it would be and try to bring your ideas to life. Annabelle’s Event Hire is 100% Charitable, so every single penny of the turnover goes directly to the Annabelle's Challenge Charity.
Direct Contact: Sarah Griffin on 07812 714744
I met annabelles father at the bury expo last year . As I had never come across EDS I was intrigued to find out more information. After an informative and …
Annabelle is a lovely little lady helping her Mum & Dad raise awareness for this rare condition. Hoping the hardwork goes someway to raising the profile of this rare condition …
Annabelle's challenge is such a worthy winner.. Princess AJ is a beautiful brave little girl raising awareness to help other people with eads.. Amazing family.
Annabelles challenge is a charity close to my heart, it is run by the family of a very brave and inspiring little girl who needs your support! Get involved and …
Lovely family Annabelle's Challenge is such a worthy cause, they get my support all the way, such a brave, lively little princess with all the hopes and dreams of any …
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