Skip to main content

Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) can be challenging to live with. It affects your body in ways that aren’t always easy to see. Your joints may feel "loose" or bend farther than most other people (called hypermobility), or your skin stretches more than you expect. Or, you may have easy bruising, fatigue, pain, or other symptoms.

Having EDS means you have a genetic condition that weakens your connective tissue. Connective tissue is what supports your skin, bones, blood vessels, and organs. It can’t support your body the way it needs to. That can lead to injuries.

There are 13 types of EDS, including:

  • Hypermobile EDS
  • Classical EDS
  • Vascular EDS

Why Choose UVA Health for EDS Care

Living with Ehlers-Danlos syndrome can feel hard, but you don’t have to face it alone. UVA Health is home to one of the very few dedicated EDS programs in the nation. Here, we see children and adult patients with EDS and hypermobility spectrum disorders (HSD).

Because EDS affects many different body systems, we make sure you have the specialists you need involved in your care. These specialists work together and with you to decide on a care plan focused on your whole person and personalized for your specific case. Our goal is to help you manage your symptoms to have a better quality of life.

There is currently no cure for Ehlers-Danlos syndrome, but we can help you manage it. Treatment focuses on lowering your risks, controlling your symptoms, and preventing complications.

Medication & Pain Management

We’ll work with you on ways to manage your pain now and work toward improving your whole wellbeing so that you have reduced pain over time.

We may also use medicines to manage other issues, like postural orthostatic tachycardia syndrome (POTS) or mast cell-related symptoms.

Physical & Occupational Therapy

Physical therapy helps strengthen the muscles around your joints and reduce your risk of injury. Occupational therapy helps you find new ways of doing tasks that avoid pain.

Nutrition

EDS can cause issue with your gut and digestion. We’ll work with you to find nutrition options that can help.

Braces or Mobility Aids

Braces or mobility gear can give you extra support or even help regain mobility and reduce fatigue and pain. If you need this, we’ll help you find supports that fit your needs.

Genetic Testing

We may recommend genetic testing. That can help pinpoint which kind of EDS you have.

We never use genetic testing to exclude you from treatment.

Beighton Score

The Beighton score measures joint hypermobility in the joints of your hands, your elbows, and knees. But this is only one small part of an overall whole-body assessment.  

EDS Symptoms

Ehlers-Danlos syndrome symptoms look different for everyone. There are 13 different types of EDS, and the symptoms depend on which type you have.

Common symptoms may include:

  • Joint issues: You may have overly flexible joints that click, feel unstable, or dislocate easily.
  • Skin changes: Your skin might be stretchy, thin, or velvety, and it may tear or bruise very easily.
  • Pain and fatigue: You might feel chronic pain in your muscles and joints, or feel extreme tiredness.
  • Digestive and heart problems: You could experience nausea, issues moving food through your body (called dysmotility), or issues with your autonomic nervous system.

Recognizing symptoms early helps us prevent major complications. If you notice your skin or joints feeling weak, or if you are bruising more often than expected, it's important to see an expert.

Children's EDS

As our ability to detect EDS gets better, we can spot it and start treating it earlier. That helps us prevent injuries and create solutions that help with your child's lifestyle.

If you've been dignosed with EDS, we may recommend that your children get genetic screening to see if they're also affected. Then they can be checked out here and start treatment with our children's EDS experts if needed.