How do you get VEDS?

VEDS is caused by changes (or mutations) in the gene called COL3A1 that tells the body how to make 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).

Can you live with VEDS?

There is no treatment for Vascular Ehlers-Danlos syndrome (VEDS). People with vascular EDS have tissue fragility that puts them at high risk for rupturing of arteries, muscles and internal organs. The long-term outlook (prognosis) for people with vascular Ehlers-Danlos syndrome is generally poor.

Is VEDS a terminal?

Vascular Ehlers-Danlos syndrome is a rare, life-threatening, autosomal dominant variant of EDS, resulting from mutations in COL3A1 gene. Affected individuals are prone to serious and potentially fatal complications, especially vascular, intestinal, and uterine ruptures.

What is VEDS life expectancy?

The overall life expectancy of patients with vEDS is dramatically shortened, largely as a result of vascular rupture, with a median life span of 48 years (range, 6–73 years). In addition, the prognosis after treatment is still poor.

Can vEDS be mild?

About Vascular Ehlers-Danlos syndrome Children with vascular Ehlers-Danlos syndrome can have mild or severe signs and may have characteristic facial features such as a small chin, thin nose and lips, and deep-set, large eyes.

Can vEDS go undiagnosed?

There can be many signs of vascular Ehlers-Danlos Syndrome (vEDS). Like other rare diseases, vEDS can be misdiagnosed or remain undiagnosed for years. Many patients report different paths to diagnosis.

Why is vEDS the most serious?

vEDS causes abnormal fragility in blood vessels, which can give rise to aneurysms, abnormal connections between blood vessels known as arteriovenous fistulas, arterial dissections, and spontaneous vascular ruptures, all of which can be potentially life-threatening.

Does vEDS cause pain?

In individuals with VEDS, a bowel perforation may occur in the sigmoid colon (lower left quadrant of the abdomen). Esophageal and gastric rupture have rarely been reported. Symptoms of a bowel perforation include: Abdominal pain that gradually increases and becomes severe or debilitating.

What mutation is vEDS?

Abstract. Vascular Ehlers-Danlos syndrome (vEDS) is a rare and severe connective tissue disorder caused by mutations in the collagen type III alpha I chain ( COL3A1) gene.

Does VEDS cause pain?

Can VEDS be mild?

Can you have vEDS and not know it?

However, too often, many with VEDS are not diagnosed until after they have had several life-threatening events or, even worse, at autopsy. Some are not diagnosed at all. Awareness is critical because, currently, 80 percent of people with VEDS have experienced at least one life-threatening event by the age of 40.