Vascular Elhers Danlos Syndrome

Vascular Ehlers-Danlos Syndrome, or vEDS, is a rare, single-gene, autosomal dominant disease caused by mutations in the body’s COL3A1 gene, and is the most severe and life-threatening form of Ehlers Danlos Syndrome (EDS). This disease affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs, and tissue together, while allowing for expansion and compression. It also plays an important role in helping the body grow and develop properly. Connective tissue is made up of proteins. The protein that plays a role in vEDS is called collagen III. These mutations can result in faulty collagen III throughout the body or a reduction in the amount of normal collagen III in the body (depending on the mutation type). This creates the features and medical problems associated with vEDS.

Because collagen III is found throughout the body, vEDS can affect many different parts of the body, including the arteries, hollow organs, skin, and lungs. These systems can be prone to tear, which can be life-threatening.   

Although vEDS is quite variable, people are often diagnosed when they have easy and frequent bruising that is not explained by other causes and spontaneous bowel and arterial tears or ruptures. Some people have characteristic facial features, thin skin, and tissue fragility

Sadly, the average life expectancy for those who suffer with vEDS is a short 48 years, though many experience life-threatening episodes long before this age. There is currently no treatment and no cure. 

• vEDS stand for vascular Ehlers-Danlos Syndrome
• vEDS was/is a confirmed diagnosis for at least six Nania Family members.  Raising money for this cause is VERY personal to us as a family
• vEDS is a rare genetic disease that effects the production of collagen III. This collagen is necessary for keeping the  heart, organs, blood vessels, and arteries strong and healthy
• 1 in 50,000 people are affected by vEDS worldwide.
• vEDS can cause life-threatening situations for affected people.
• As of today, there is no treatment or cure for vEDS