Guide to understanding the inherited blood disorder thalassaemia - how it's inherited and what it's like to live with the disorder. Helen Matsas has a disorder called thalassaemia major and she wants other people to know about it for two reasons. One is to make them aware of the risk of this inherited disorder. The other is to encourage more people to donate the blood that makes it possible for her and others with thalassaemia major live a normal life - having this condition means having a blood transfusion in hospital every four or five weeks. With each transfusion using around 400 mls of blood, it's no wonder that people with thalassaemia major use around 10 per cent of the Blood Bank's blood.
Thalassaemia is one of the most common inherited blood disorders in the world.
Although it's particularly common in people whose ancestors come from countries around the Mediterranean, the Middle East, Africa, Asia and some Pacific Islands, the disorder may now be found in other communities too, as a result of centuries of world migration and inter-marriage. In NSW alone, there may be around 60,000 people who, unknowingly, carry the thalassaemia gene and may pass it on to their children. That's why it's important for couples planning to have children to think about the implications of thalassaemia major and ask to have blood tests to find out if they have the thalassaemia gene or not. This is particularly important if their families are originally from the countries mentioned earlier. To understand how this disorder is passed on through families, you need to know there are two types of thalassaemia.