Beta thalassaemia Q&As
Published by Bupa's health information team, November 2008.
Answers to questions about beta thalassaemia
This section contains answers to common questions about this topic. Questions have been suggested by health professionals, website feedback and requests via email.
- Will I need treatment if I have beta thalassaemia intermedia?
- Are there any risks associated with the tests that can be done during pregnancy?
- Will I be able to have a stem cell transplant?
Will I need treatment if I have beta thalassaemia intermedia?
It depends. Everyone with beta thalassaemia intermedia is affected differently so whether or not you need treatment will vary according to how serious your symptoms are.
Explanation
Many people with beta thalassaemia intermedia are healthy and their growth isn't affected. You may be slightly anaemic, but often this doesn't cause any problems. However, it's quite likely that your spleen will be enlarged and blood will collect there. Your spleen is an organ that is part of your immune system, but you can survive without it. Therefore, it's possible that your doctor may suggest surgery to remove it to increase the blood and haemoglobin that is available for the rest of the body.
If you have beta thalassaemia intermedia, you will absorb more iron from your diet than someone without the condition. Too much iron in your body can be harmful so you may need to take medicines called iron chelators to stop it from building up. However, you are unlikely to have serious iron overload unless you are taking iron tablets (which most people should not) or receiving blood transfusions.
You may need to have regular blood transfusions if you have severe anaemia or if your growth or facial bones are affected. This usually resolves these problems, but there are also disadvantages associated with the treatment including the build-up of iron in your body. It's important to think about the balance of benefits and risks before starting regular transfusions. Your doctor can give you more information about blood transfusions.
Sources
- Hoffbrand AV, Moss PAH, Pettit E. Essential haematology. 5th ed. Oxford: Blackwell Publishing, 2006
- Diet for thalassaemia. UK Thalassaemia Society www.ukts.org, accessed 29 January 2008
- Beta thalassaemia intermedia. UK Thalassaemia Society www.ukts.org, accessed 5 December 2007
Are there any risks associated with the tests that can be done during pregnancy?
Yes. There is a risk with all medical procedures, but if done correctly the chance of something going wrong is very small.
Explanation
The main risk from chorionic villus sampling (CVS), amniocentesis and fetal blood sampling is miscarriage. The risk varies for each of the tests and also depends on how early or late during pregnancy it's carried out.
Miscarriage happens in about two out of every 100 CVS tests that are done. The earlier in pregnancy the test is carried out, the lower the risk.
The risk of miscarriage after amniocentesis is less than with CVS. It occurs in about one in every 100 women who have the test.
With fetal blood sampling, the risk of miscarriage varies from one in 100 for healthy babies to 13 in 100 for babies who have a number of health problems.
Sources
- Chorionic villus sampling. What are the risks? Royal College of Obstetricians and Gynaecologists. www.rcog.org.uk, accessed 4 December 2007
- Amniocentesis. What are the risks? Royal College of Obstetricians and Gynaecologists. www.rcog.org.uk, accessed 28 November 2007
- Chamberlain G, Steer P. Turnbull's Obstetrics. 3rd ed. London: Churchill Livingstone, 2001
Will I be able to have a stem cell transplant?
It's possible, but there are a number of factors that need to be considered.
Explanation
Your likelihood of having a stem cell transplant depends on several things. One of the main things that determines whether or not you can have a transplant is finding a suitable donor. In order for a transplant to be successful, the stem cells must come from someone who has the closest match possible for your set of genes. The best match comes from an identical twin, but he/she will also have the same form of thalassaemia and therefore probably won't be suitable. Sometimes a close family member may be able to donate stem cells. It may also be possible to find an unrelated donor from the register of volunteers.
Your ability to have a transplant will also depend on your age and general health. You will need to be well enough to cope with several months of treatment that may have unpleasant side-effects. This includes chemotherapy before the transplant to kill the thalassaemic cells - this can have side-effects such as sickness and a sore mouth - as well as a great many blood tests and transfusions both during and after the procedure.
There is also the possibility that the transplant may not work. It's possible that your body may reject the stem cells and your thalassaemia will come back. Other possible complications include infection and a severe type of allergic reaction caused by the donor cells attacking your own.
Sources
- Bone marrow and stem cell transplantation. Leukaemia Research. www.lrf.org.uk, accessed 5 December 2007
- Stem cell transplantation for thalassaemia. UK Thalassaemia Society. www.ukts.org, accessed 5 December 2007
Related topics
This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Dr John Houghton FRCP, FRCPath, Consultant Haematologist, Salford Royal Hospital Trust, and by Bupa doctors. It has also been reviewed by the UK Thalassaemia Society. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.
Publication date: November 2008.
Beta thalassaemia factsheet
Visit the beta thalassaemia health factsheet for more information.
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