Why do I need to know about Thalassaemia?
Thalassaemia is a serious genetic blood disorder that is passed through generations. It can have a devastating effect on you and your future family. Everybody should find out more about thalassaemia even if planning a family is not contemplated at this stage.
What is Thalassaemia?
Thalassaemia is a blood disorder where the child is unable to produce enough red blood cells. It is a chronic and life threatening condition and there is no cure at present. Medical supervision and proper advice and support help to improve quality of life and reduce disability.
Could I be a carrier?
Being a carrier causes no ill health. If you are a carrier you will not develop Thalassaemia Major. Thalassaemia can affect anyone from any population however, some communities have a higher incidence than others:
|Cypriots||1 in 7|
|Asian||1 in 10-30|
|Chinese||1 in 30|
|African Caribbean||1 in 50|
|White British||1 in 1000|
When two people who are thalassaemia carriers have a child, there is one in four chance the child will have thalassaemia Major. The risk is the same in each pregnancy and you cannot know which pregnancy or in which order an affected child will come.
How and where do I get tested?
The incidence of thalassaemia in your family can be reduced if you and your partner get tested before planning a family.
A simple blood test can be carried out at your local surgery, hospital or family planning clinic for free. Everybody over the age of 15 should have the thalassaemia test although it can be done earlier.
The incidence of thalassaemia in your family can be reduced if you and your family get tested before planning a family.
You are no ill
Firstly, lets us reassure you that Beta Thalassaemia Trait will not affect your health. If you have just learnt that you or someone you know has Beta Thalassaemia Trait, quite naturally you will be concerned. Questions come tumbling through your head, what does this mean? Am I ill?, can it develop into Thalassaemia Major?
Beta Thalassaemia is a genetic blood condition which affects any race, but is more common in those who comes from Asia, Africa, Caribbean and Middle East or the Mediterranean.
Beta Thalassaemia Trait (or beta thalassaemia minor)
This is the carrier state and people who carry Beta Thalassaemia Trait are perfectly healthy. They may have smaller red blood cells than usual which can often be confused with shortage of iron in the blood, but this does not meat that the person with Beta Thalassaemia Trait cannot become short of iron at the same stage in their life.
Beta Thalassaemia Trait, like hair colour, general body build and other physical characteristics is passed down from parents to children through genes. Genes are tiny bit of information contained in the father`s sperm and mother`s eggs, which for a blueprint for the new life. Genes come in pairs. For each characteristic there is usually one gene from the father and one from the mother. One of these pairs of genes determines the type of haemoglobin (Hb for short) you have. Hb is the substance which carriers oxygen in your blood and gives it the red colour. If you have Beta Thalassaemia Trait, it means that you have inherited one unusual Hb gene from the other parent. This combination of genes does not cause disease.
Why does it matter if you carry the Thalassaemia Trait?
It is important to know that you have Beta Thalassaemia Trait, because if you and your partner have the same condition you could be at risk of having a child with Thalassaemia Major, a more serious blood disorder.
N.B. – There are also other unusual Hb types that may cause similar blood disorder. Please contact us for more information.
Beta thalassaemia major
Children who are born with Thalassaemia major cannot make enough Hb in their blood. As a result they may become severely anaemic and need regular blood transfusions every 4-6 weeks, along with other special treatment.
Can thalassaemia trait turn into thalassaemia major?
No! Thalassaemia is an inherited condition which it can only be passed form parents to children. If a person is born with Thalassaemia Trait it cannot develop into Thalassaemia Major.
Can any treatment change thalassaemia trait?
No! If you are born with it, you will always have it; on the other hand, because you are healthy you do not need any special treatment.
- Your Thalassaemia Trait is not an illness and does not affect your health.
- If your partner does carry Thalassaemia Trait or any other unusual Hb, there is no risk of having children with serious blood disorder; however your children could be carriers like yourself.
- Encourage your partner to have a blood test.
- Talk to other family members about thalassaemia.
- Post screening counselling is available at OSCAR Sandwell Centre.
Free testing for Thalassaemia and other abnormal haemoglobins is available contact OSCAR Sandwell Centre.
If you have Thalassaemia Trait or Thalassaemia Major and you have not been counselled, please contact us for free post screening/diagnosis counselling and learn more about these conditions.
Where can I get more information?
Take a look at our Useful links page for advice and further information
View our presentation about the condition