Ehlers-Danlos Syndromes FAQs

Living with Ehlers-Danlos syndrome (EDS) can feel challenging. 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.

Why choose UVA Health for EDS care?

UVA Health brings together specialists who work together to provide you with personalized care focused on your whole person. We address the full range of EDS and hypermobility disorders. We recognize how these conditions can impact every part of your life. We’re dedicated to helping you manage your symptoms, have a better quality of life, and benefit from research into new treatments.

What is EDS?

Ehlers-Danlos syndrome is a genetic disorder that affects connective tissue. This tissue supports your skin, organs, joints, and blood vessels. There are 13 types of EDS. The symptoms can often overlap.

Hypermobile EDS (hEDS) is the most common type of EDS. It is characterized by joint hypermobility, pain, and other systemic symptoms. hEDS can also associate with skin, gastrointestinal, cardiovascular, autonomic, and neurological issues.

What causes EDS?

Ehlers-Danlos happens because you inherited the genetic mutations from a parent. It may also occur spontaneously. There’s no way to prevent, or reduce your risk of having it. Unlike the more rare types of EDS, no specific gene has been identified as the cause of hEDS.

What are the symptoms of EDS?

Signs of 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
• Frequent nosebleeds
• High blood pressure
• Sunken chest
• Thin, almost see-through skin
• Varicose veins
• Joint hypermobility – instability or dislocations or partial dislocation of joints
• Chronic pain – often in joints and muscles
• Chronic fatigue                      
• Gastrointestinal complication
• Autonomic dysfunction or POTS

If your doctor suspects EDS, they may do a physical exam and ask about your family medical history. Sometimes, you’ll need imaging, such as an echocardiogram or CT scan, to rule out other disorders or look for aneurysms. Your care team may include primary care physicians, physical and occupational therapists, and pain specialists.

How do you treat EDS?

There’s no cure for hEDS. Instead, treatment focuses on lowering risks and controlling symptoms, following a long-term care plan that your primary care physician helps to manage.

At UVA Health, your care team will develop a plan that fits your unique situation. Ehlers-Danlos syndromes affect many different body systems, so it's important to have different specialists involved in your care.

• Genetic counseling for you and your family
• Physical therapy
• Occupational therapy
• Nutrition counseling
• Pain management
• Patient education