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Ehlers-Danlos syndrome (EDS)

Ehlers-Danlos syndrome (EDS) refers to a group of disorders that are all connected but have different symptoms.

EDS is inherited from your parents, which means you're born with the condition. EDS affects the connective tissue in your body.

Connective tissue is throughout your body – in skin, muscles, tendons and ligaments, blood vessels, organs, gums and your eyes. It helps your body be strong and flexible.

If you have EDS, your connective tissue can stretch beyond its limits and become damaged.

There are 13 types of EDS. The most common effects are

EDS is rare, approximately 1 in 5,000 people have it. EDS affects women more than men and is in all races across the world.

Although you're born with the disorder, your symptoms can start at any age. Often, they're first noticed in teenagers.

EDS can take years to diagnose because it's rare. Many doctors aren't very familiar with it and the symptoms can be similar to many other conditions.

People with EDS often have other disorders, such as postural orthostatic tachycardia (POTS) and mast cell activation syndrome (MCAS).

Symptoms of Ehlers-Danlos syndrome

People with EDS may all notice different symptoms. Many of the common symptoms may not seem serious on their own but if the damaged connective tissue is in important structures, such as blood vessels, it can be very serious or life-threatening.

Common symptoms include:

Diagnosing Ehlers-Danlos syndrome

Diagnosing EDS can take time. It's important to talk to your general practice team and explain your concerns. Tell them about any symptoms in other members of your family and your history of past injuries or illness.

Your general practice team will look at your skin and how mobile your joints are. There are checklists they can use and a score for joint hypermobility that will help with the diagnosis.

They may suggest tests such as skin biopsies, echocardiograms and other imaging tests to look at your joints and blood vessels.

There is a genetic test that you may have to pay for.

Treating Ehlers-Danlos syndrome

Although EDS cannot be cured, treatment can prevent further injuries or complications. You're likely to get the most benefit from a multi-disciplinary approach, which means you'll need to see several different health professionals. Each will help in their own way.


Self-care for Ehlers-Danlos syndrome

There are several ways to manage EDS symptoms and improve your quality of life. These include:

It may be helpful to meet other people who have EDS. Consider contacting support groups and online communities.

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Written by HealthInfo clinical advisers. Page created September 2023.


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