There are a number of things you can do to help you stay as healthy as possible if you have thalassaemia.
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 do not 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
Make sure you take your medicine as advised and attend all of your check-ups.
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 discuss the effects of this with a genetic counsellor
- some people with thalassaemia need fertility treatment 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, use a reliable form of contraception.
It's important to let your healthcare 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 thalassaemia.
You may need close monitoring during surgery and a blood transfusion before or afterwards to reduce the risk of complications.
It's important to make sure you know when to get medical advice and where to go, as thalassaemia can cause a number of serious problems that can appear suddenly.
Symptoms to look out for include:
- a high temperature
- diarrhoea and vomiting
- a fast heartbeat
- rapid breathing
- dizziness or fainting
- sudden tummy (abdominal) pain or swelling
- severe or worsening yellowing of the skin or eyes (jaundice)
- weakness in the limbs
- pounding, fluttering or irregular heartbeats (palpitations)
- fits (seizures)
Contact your GP or healthcare team immediately if you develop any of these symptoms.
If this is not possible, go to your nearest A&E department.
If you're not 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.