Ehlers Danlos Syndrome
Living withEDS
Source: NHS
In this topic (7)
There's no specific treatment for EDS, but with support and advice it's possible to manage many of the symptoms.
Adapting your activities
It's important to be careful about activities that put a lot of strain on your joints or put you at risk of injury. However, it's important not to be overprotective and avoid living an otherwise normal life.
Advice will depend on which type of EDS you have and how it affects you.
- you may be advised to avoid some activities entirely, such as heavy lifting and contact sports
- for some activities, you may need to wear appropriate protection and be taught how to reduce the strain on your joints
- lower-risk activities, such as swimming or pilates ,may be recommended to help you stay fit and healthy
- if fatigue is a problem, you can be taughtways toconserve your energy and pace your activities
For more tips and advice on joint care, you can read about living with EDS on the Ehlers-Danlos Support UK website.
Specialist support
People with EDSmay also benefit from support from a number of different healthcare professionals. For example:
- a physiotherapist can teach you exercises to help strengthen your joints, avoid injuries and manage pain
- an occupational therapist canhelp you manage daily activities and give advice on equipmentthatmay help you
- counselling and cognitive behavioural therapy (CBT) may be usefulif you're struggling to cope withlong-term pain
- for certain types of EDS, regular scans carried out in hospital can detect problems with internal organs
- genetic counselling can help you learn more about the cause of your condition, how it's inherited, and what the risks of passing it on to your children are (see below)
Your GP or consultant can refer you to these services.
Articles for Ehlers Danlos Syndrome
Getting medical advice
See your GP if you have several troublesome symptoms of EDS. You don't usually need to worry if you only have a few symptoms and they're not causing any problems. Joint hypermobility, for example, is
How EDS is inherited
EDS can be inherited, but in some cases it occurs by chance in someone without a family history of the condition. The two main ways that EDS is inherited are: autosomal dominant inheritance (hyper
Information about you
If you have EDS, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). This helps scientists look for better ways
Introduction
Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue. Find out about the symptoms, causes and treatments.
Living withEDS
There's no specific treatment for EDS, but with support and advice it's possible to manage many of the symptoms. Adapting your activities It's important to be careful about activities that put a lot
Main types of EDS
EDS-hypermobile type is the most common type of EDS. Rarer types include classical EDS, vascular EDS and kyphoscoliotic EDS. EDS-hypermobile type EDS-hypermobile type (EDS-HT), also known as hypermo
More information
The following websites provide moreinformation, advice and support forpeople with EDS and their families: Ehlers-Danlos Support UK you can also call their free helpline on0800 907 8518, find local