Ehlers-Danlos syndrome is a genetic condition that mainly affects the joints and skin. People with Ehlers-Danlos syndrome, or EDS, have very loose joints and easily bruised or stretchy skin. Ehlers-Danlos syndrome can’t be treated, but the symptoms can usually be managed.
Symptoms or signs of Ehlers-Danlos syndrome
There are many different types of EDS, each with clusters of symptoms. Certain groups of symptoms go with each type of EDS.
The common feature is that people with EDS have 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.
Ehlers-Danlos syndrome diagnosis
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:
- medications to ease paid 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.
Where to get help with Ehlers-Danlos syndrome
For help and support about EDS, contact:
- EDSAUS - Ehlers-Danlos Syndrome Support in Australia
- Ehlers-Danlos and Joint Hypermobility Syndrome Australia (Facebook group)
And you can read more about genetic conditions and genetic counselling.
The NSW Centre for Genetics Education has a lot of good consumer-oriented information. Its Cancer Genetics Resource Directory is a source of more detailed information on genetic disorders and services.
If you're pregnant or thinking about having a child, see Pregnancy, birth and baby's information on genetic counselling or call the helpline on 1800 882 436.
If you or someone you care for has a rare genetic condition, you may be able to find a support group through Genetic Alliance Australia.
Last reviewed: November 2016