Mission StatementDisclaimerAffiliatesContact Us



Thalassaemia is a common gentic blood disorder found amongst the Asian Community


Thalassaemia is a common genetic blood disorder found amongst the Asian communities, it can have a devastating impact upon you and your future family. Emphasis is needed on preconception testing (testing before planning a family) to determine if you are a healthy carrier of Thalassaemia.

If you and your future/current partner are found to be Carriers then you should know before planning a family what Thalassaemia is and how to arrange for early testing in a pregnancy to see if the baby has Thalassaemia Major.

What is Thalassaemia
Thalassaemia is a genetic blood disorder that is inherited from parents. There are two forms, Thalassaemia Carrier (also known as Thalassaemia Minor or Trait) and Thalassaemia Major. Being a Thalassaemia Carrier causes no ill health but when two people who are Thalassaemia carriers have a child, there is a 25% chance at each pregnancy that they will have a baby with Thalassaemia Major.

Thalassaemia Major is a serious blood disorder where the baby is unable to produce enough red cells in the blood. Without treatment, this child eventually dies. With treatment, the child is able to grow and become an adult but faces many health complications. There is no safe and effective cure for Thalassaemia.

How is Thalassaemia Major treated?
At present the treatment consists of blood transfusions in hospital every month and using a ‘continuos’ injection for 8-12 hours each night at home. Despite treatment, the Thalassaemia Major sufferer may face many health complications like diabetes, growth and sexual development problems and heart problems.

The treatment is life long and there is no safe and effective cure for Thalassaemia. On rare occasions, a bone marrow transplant may be helpful.

Who may be carriers?

In the UK, the Muslim community from the Indian sub-continent is at risk. It is estimated that up to 1 in 7 may be carriers. If you or your family originate from Pakistan, India, Bangladesh or Sri Lanka, you may be at risk of being a carrier of Thalassaemia.

Some communities have a higher incidence than others.

1/7 to 1/10 Gujeratis
1/10 for Sindis
1/20 for S. Indians
1/25 for Pakistanis
1/15 to 1/30 for Punjabis & Bangladeshis

How can I be tested?
A very simple procedure were a small sample of your blood is taken and sent to a laboratory. The result is usually obtained very quickly. Ask your GP or family planning clinic to arrange for the Thalassaemia blood test – ‘Haemoglobin Electrophoresis’. Please get the blood test done as soon as possible and before you plan a family.

For further information please contact the UK Thalassaemia Society on 020 8882 0011 or visit their website at www.ukts.org


UK Thalassaemia Society

Muslim Resources

Muslim Directory