Vascular Ehlers-Danlos Syndrome

Living with vascular Ehlers-Danlos syndrome (VEDS) is very challenging. That's because it affects the strength of your blood vessels, making them fragile and putting you at high risk for severe bleeding. At UVA Health, we understand how serious this condition can be. You don’t have to face it alone. We’re here to provide effective care tailored to your needs.

Vascular Ehlers-Danlos Syndrome Treatment at UVA Health

Because there currently isn't a cure, vascular Ehlers-Danlos syndrome treatment focuses on reducing health risks and managing symptoms. At UVA Health, your care team will develop a plan that fits your unique situation. Treatment may include:

• Genetic counseling for you and your family
• Medications to control blood pressure and protect blood vessels
• Regular scans to monitor your arteries
• Surgery to repair blood vessel damage, if needed

Vascular EDS can lead to dangerous bleeding, internal injuries, or a stroke. We’ll provide education on safety and emergency planning to help you stay confident and informed.

Why Choose UVA Health for Vascular Ehlers-Danlos Syndrome Care

UVA Health brings together specialists in genetics, vascular diseases, and other fields to offer holistic care close to home. We understand all the ways vascular EDS can affect your life. We’re here to help you manage it and live well. You’ll benefit from:

• Access to advanced diagnostic tools and surgical techniques
• Ongoing monitoring and early intervention to reduce risks
• Personalized treatment plans for your health needs, including medication therapy
• Support from a coordinated, compassionate team committed to your well-being

What is Vascular Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome (EDS) is a rare genetic disorder that affects connective tissue. This tissue supports your skin, organs, joints, and blood vessels. There are 13 types of EDS. In vascular EDS, your blood vessels and organs are more fragile. That makes your blood vessels more likely to develop bulges in the wall of the vessel (aneurysms), tears and separation of the layers in the blood vessel wall (dissections), and tears through the blood vessel wall (ruptures). Sometimes, these complications can be life-threatening, especially if they affect major arteries.

What Causes VEDS?

A mutation in a gene called COL3A1 causes vascular EDS. You can inherit this genetic mutation from a parent, or it may happen spontaneously. There’s no way to prevent it or reduce your risk of having it. Genetic testing can help your healthcare team plan the best care for you and your family.

Symptoms of Vascular Ehlers-Danlos Syndrome

Signs of vascular EDS can look different from person to person. But spotting symptoms early can help prevent major complications. You may notice:

• Easy bruising
• Facial features like thin lips and nose, small chin, and large eyes that are far apart
• High blood pressure
• Sunken chest
• Thin, almost see-through skin
• Early-onset varicose veins
• Spontaneous lung collapse

If your doctor suspects vascular EDS, they may perform a physical exam and ask about  your family medical history. Genetic testing can help confirm the diagnosis. You'll also need imaging, such as an echocardiogram or CT scan, to rule out other disorders or look for aneurysms.