Ehlers-Danlos syndromes (EDS)
Find out about Ehlers-Danlos syndromes (EDS), including the symptoms, causes and treatments.
The symptoms of Ehlers-Danlos syndromes (EDS) affect everyone differently, but often include:
- very flexible joints (joint hypermobility)
- stretchy skin that is easily bruised or scarred
- joint or muscle pain
- often being injured, such as sprains, strains or dislocations
- tiredness (fatigue)
- cuts or wounds healing slowly
Some people with EDS have mild symptoms, while others have more severe symptoms that need to be carefully managed.
You may need medical help if you or your child has symptoms of Ehlers-Danlos syndromes (EDS).
See a GP if:
You or your child has symptoms of Ehlers-Danlos syndromes (EDS) and:
- your symptoms are getting worse or affecting your life
- you're worried about your baby or toddler
There are 13 different types of Ehlers-Danlos syndrome (EDS). Each type is caused by a different inherited altered gene. Most types are rare.
All types of EDS share some common symptoms, but each also has their own symptoms that not everyone with EDS will have.
The most common type of EDS is called hypermobile EDS (hEDS).
The most severe type is called vascular EDS, which is rare but sometimes life-threatening as it can affect your internal organs.
Hypermobility spectrum disorder (HSD)
Some people with symptoms of EDS may be diagnosed with a different condition called hypermobility spectrum disorder (HSD).
HSD is treated and managed in a similar way to hypermobile EDS.
Find out more
A GP may be able to diagnose Ehlers-Danlos syndrome (EDS) in you or your child based on the symptoms.
If you have symptoms of a rarer type of EDS, you may be referred to a specialist for an assessment and genetic testing (a blood test).
Some people with rare or severe EDS may be referred to a specialist clinic called the EDS National Diagnostic Service.
There is no cure for Ehlers-Danlos syndromes (EDS), but support is available to help you manage your symptoms.
A range of healthcare professionals may be involved in your or your child's care. They can help create a care plan and advise you about which treatments are suitable for your specific needs.
Support you may be offered includes:
- physiotherapy – to teach you exercises that help to strengthen your joints, avoid injuries and manage pain
- occupational therapy – to help you manage daily activities and give advice on equipment that may help you
- cognitive behavioural therapy (CBT) – if the pain or other symptoms of EDS are affecting your mental health
- genetic counselling – to help you learn more about the cause of your condition, how it's inherited, and what the chances are of passing it on to your children
- scans or tests in hospital to check for problems with your internal organs
If you have an Ehlers-Danlos syndrome (EDS), there are some things you can do that may help to ease joint pain.
Your doctor or specialist will also give you specific advice based on your symptoms and the type of EDS you have.
Do
gentle exercise – try low-impact activities, such as swimming or pilates
eat a healthy diet with regular meals to keep your energy levels stable and help prevent vitamin deficiencies
Don't
try to avoid heavy lifting and contact sports, such as football and rugby – they are more likely to cause serious injury and make any pain worse
try to avoid jobs that are physically demanding, such as nursing or heavy manual labour
Ehlers-Danlos syndromes (EDS) are caused by altered genes being passed on to a child by their parents (inherited).
Someone with one type of EDS can only pass on the same type to their children, but it can be more or less severe.
The chance of passing on the altered gene can vary depending on the type of EDS.
Someone with the most common type (hypermobile EDS) has a 50% chance of passing it on to each of their children.
If you or your child has an Ehlers-Danlos syndrome (EDS) that's affecting your life, healthcare professionals will be there to support you.
You may also find it helpful to get support from other people with EDS, or parents of children with EDS.
Ehlers-Danlos Support UK
The charity Ehlers-Danlos Support UK provides a range of support and information for people affected by EDS.
If you or your child has an Ehlers-Danlos syndrome (EDS), your care team will pass information on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).
This helps scientists look for better ways to prevent and treat EDS. You can opt out of the register at any time.
