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About

Vascular Ehlers-Danlos Syndrome

About Veds

Vascular Ehlers-Danlos Syndrome (vEDS) is a rare genetic disorder that affects the body’s connective tissue. Connective tissue is responsible for providing strength, structure, and elasticity to various parts of the body, including the skin, joints, and blood vessels. Individuals with vEDS have a defect in the COL3A1 gene, which encodes for type III collagen, a major component of blood vessels.

Symptoms of vEDS can include thin, translucent skin that is prone to bruising and tearing, hypermobility of joints, easy bruising, and characteristic facial features. However, the most serious complication of vEDS is the risk of arterial or organ rupture, which can occur spontaneously and without warning. This can result in life-threatening bleeding and can occur at any age.

No Cure

There is currently no cure for vEDS, and treatment is primarily focused on managing symptoms and reducing the risk of complications. This can include regular monitoring of blood vessels and organs to detect potential problems early, as well as lifestyle modifications to reduce the risk of injury or trauma. Medications such as beta blockers or angiotensin receptor blockers may also be prescribed to help reduce the risk of arterial rupture.

Individuals with vEDS require specialized medical care and should work closely with a team of healthcare professionals, including genetic counselors, vascular surgeons, and cardiologists. Genetic counseling is also recommended for individuals with a family history of vEDS to assess their risk of inheriting the condition and to provide information on the options for genetic testing and family planning.

Overall, vEDS is a serious and potentially life-threatening condition that requires careful management and monitoring. With proper care, individuals with vEDS can manage their symptoms and reduce the risk of complications, allowing them to live full and active lives.

Annabelle’s Challenge

Annabelle’s Challenge is the leading charity for Vascular Ehlers-Danlos syndrome (Vascular EDS) in the UK. 
 
At the heart of the charity is Annabelle who is the inspiration behind our challenge to provide education, research and support for patients and families affected by Vascular EDS. It was founded in 2013 by Jared and Sarah Griffin shortly after their daughter Annabelle was diagnosed at the age of 3.