Ehlers-Danlos syndrome
Key facts
- Ehler’s Danlos syndrome (EDS) is a group of 13 genetic conditions that affect the joints, skin and blood vessels.
- Each type of EDS has unique symptoms, but symptoms common to all EDS subtypes include flexible joints, being ‘double-jointed’ and having stretchy or fragile skin.
- There is no cure for EDS, but treatment is available to help you manage symptoms and any complications.
- Genetic testing can be used to diagnose all types of EDS except for hEDS (hypermobile EDS) which is diagnosed based on your symptoms, physical examination and medical history.
What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome (EDS) is a group of 13 genetic conditions. EDS mainly affects your joints, skin and blood vessel walls, known as connective tissues. Read more on connective tissue diseases.
Each type of EDS has its own genetic causes and unique symptoms. Some symptoms are common across the different types of EDS. These include loose and hypermobile joints (being ‘double-jointed’) and stretchy or fragile skin.
What causes Ehlers-Danlos syndrome?
Most types of Ehlers-Danlos syndrome have a genetic cause.
For more information on how genes affect your health, read the guide to genetic disorders.
What are the symptoms of Ehlers-Danlos syndrome?
While each type of EDS has its own unique symptoms, symptoms shared among all types of EDS include:
- flexible and loose joints – being ‘double-jointed’
- stretchy or fragile skin that easily bruises
- chronic musculoskeletal pain (pain that affects bones, joints or muscles)
- fatigue
- cognitive impairment
- clumsiness or poor coordination
- muscle weakness
Some people with EDS have distinctive facial features such as a thin nose, thin upper lip, large eyes and ears without lobes.
CHECK YOUR SYMPTOMS — Use the Symptom Checker and find out if you need to seek medical help.
When should I see my doctor?
You should see your doctor if you have symptoms associated with EDS. It’s important to remember that most of these symptoms will have another cause.
If your doctor thinks you might have EDS, they may refer you to a geneticist for testing.
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How is Ehlers-Danlos syndrome diagnosed?
All types of EDS, except for the most common type (hypermobile EDS (hEDS)) can be diagnosed by a specialist doctor (geneticist) with genetic testing via a blood test.
Your doctor can diagnose hEDS by:
- assessing your symptoms
- asking about your personal and family medical history
- physical examination
How is Ehlers-Danlos syndrome treated?
As there is no cure for EDS, treatment focuses on managing your symptoms and complications. It can include:
- pain management
- physiotherapy treatment to
- help manage joint hypermobility
- provide joint support
- develop a low impact exercise program to develop strength
- provide education on injury prevention
- rehabilitate from injury
- assistive or mobility devices to help manage everyday tasks
You should be careful when doing activities that can put stress on your joints and increase the risk of injury, such as contact sports.
You may be cared for by a team of specialist doctors and allied health professionals including:
Your healthcare team will provide you with education about EDS to help you advocate for yourself and get the care you deserve.
Your doctor may work with you to create a chronic disease management care plan, to help you access a Medicare rebate of up to 5 allied health services. You may also be eligible for NDIS funding to help with the costs of treatment.
Complications of EDS
Some of the problems associated with EDS, such as joint dislocations and other symptoms, tend to get worse over time. Maintaining your health and wellbeing, in partnership with your medical team, may reduce or slow the rate of any complications.
Resources and support
- For help and support for people with EDS, contact Ehlers-Danlos Australia.
- You can read more about genetic conditions and genetic counselling at NSW Centre for Genetics Education Genetic Alliance Australia.
- Contact Pregnancy, Birth and Baby for information on genetic counselling or call 1800 882 436 for advice, support and guidance.
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Last reviewed: December 2023
