What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome is a genetic condition that mainly affects the joints, skin and walls of the blood vessels. People with Ehlers-Danlos syndrome, or EDS, have very loose, hypermobile joints. Their skin is stretchy and fragile. Ehlers-Danlos syndrome can’t be treated, but the symptoms can usually be managed.
What are the symptoms of Ehlers-Danlos syndrome?
There are many different types of EDS. All of them involve extremely flexible joints and fragile skin that bruises and stretches easily.
Some find their joints are so flexible that they have frequent dislocations, and this often leads to pain in the joints.
Some people with EDS have distinctive facial features such as a thin nose, thin upper lip, large eyes and ears without lobes.
How is Ehlers-Danlos syndrome diagnosed?
Your doctor will assess your symptoms and medical history to diagnose Ehlers-Danlos syndrome. A genetic test might be done to confirm the diagnosis.
Living with Ehlers-Danlos syndrome
If you have Ehlers-Danlos syndrome, you will need to be careful when doing activities that can put stress on your joints and increase the risk of injury, such as contact sports.
There is no specific treatment for EDS, but symptoms can be managed through:
- medicines to ease pain and reduce blood pressure
- physical therapy, such as exercises or physical braces to keep joints as stable and strong as possible
If you have EDS, you may see a range of health professionals to help you manage your condition, including physiotherapists, occupational therapists, psychologists, rheumatologists and genetic counsellors.
Resources and support
For help and support concerning EDS, contact:
- EDSAUS - Ehlers-Danlos Syndrome Support in Australia
- Ehlers-Danlos and Joint Hypermobility Syndrome Australia (Facebook group)
You can read more about genetic conditions and genetic counselling at:
- NSW Centre for Genetics Education
- Contact Pregnancy, Birth and Baby for information on genetic counselling or call the helpline on 1800 882 436
- Genetic Alliance Australia
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Last reviewed: September 2021