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 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.

Content supplied by the NHS Website

Medically Reviewed by a doctor on 21 Dec 2018