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Read about living with thalassaemia, including what you can do to stay healthy and advice about planning a pregnancy.

There are a number of things you can do to help you stay as healthy as possible if you have thalassaemia.

See below for information about:

Healthy lifestyle

Pregnancy and contraception

Surgery precautions

When to get medical advice

Healthy lifestyle

To help reduce your chances of developing some of the problems associated with thalassaemia, it's a good idea to:

  • have a healthy, balanced diet – you don't usually need a special diet, although sometimes you may be advised to take supplements such as folic acid, calcium or vitamin D
  • exercise regularly – regular exercise, particularly weight-bearing  and aerobic exercise, can help strengthen bones and reduce the risk of osteoporosis
  • avoid smoking and drinking excessive amounts of alcohol – this can help keep your bones and heart healthy
  • try to avoid infection – wash your hands with soap and water regularly, avoid close contact with sick people when possible and ensure all your vaccinations are up to date

You should also make sure you take your medication as advised and attend all of your check-ups.

Pregnancy and contraception

Women with thalassaemia major or other severe types can have a healthy pregnancy, but it's a good idea to speak to your care team for advice first because:

  • it may be useful to find out if your partner is a carrier of thalassaemia and to discuss the effects of this with a genetic counsellor
  • some people with thalassaemia need fertility medication to help them get pregnant
  • during pregnancy there's an increased risk of problems such as heart problems in the mother and growth problems in the baby 
  • you may need extra monitoring and changes to your treatment during pregnancy

If you're not planning a pregnancy, you should use a reliable form of contraception.

Surgery precautions

It's important to let your care team know if you need to have an operation under general anaesthetic at any point. You should also tell your surgeon that you have thalassaemia.

This is because general anaesthetic can cause problems such as an increased risk of blood clots for people with thalassemia.

You may need close monitoring during surgery and a blood transfusion before or afterwards to reduce the risk of complications.

When to get medical advice

It's important to make sure you know when to get medical advice and where to go because thalassaemia can cause a number of serious problems that can appear suddenly.

Problems to look out for include:

Contact your GP or care team immediately if you develop any of the above symptoms. If this isn't possible, go to your nearest accident and emergency (A&E) department. If you aren't well enough to travel to hospital yourself, dial 999 for an ambulance.

Make sure the medical staff looking after you are aware that you have thalassaemia.

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