Thalassaemia remains the most common single gene disorder in Malaysia. 5% of its population are carriers or thalassaemia traits and the number of treatment dependents or thalassaemia major was 942 in 1996. These patients require monthly blood transfusions in order to live. However frequent transfusions build up excess iron load in their bodies. Too much iron can damage the normal function of the vital organs and if left untreated it will lead to death. Due to the high cost of desferrioximine (desferal), the sole medication for treating iron overload, only 25% of thalassaemia major patients receive desferal treatment. Associations and support groups are unable to provide desferal treatment needed by the remaining number of patients due to financial constraints.
Treatment for thalassaemia is life long, painful and costly.This compilation aims to look at the magnitude of thalassaemia problem in Malaysia and to answer questions frequently asked in relation to thalassaemia. Hopefully it will encourage the readers to have a blood test to see if they carry the thalassaemia traits themselves and thus help to stamp out thalassaemia in the future. This website is maintained by a concerned parent with a beta-thalassaemia major child with the purpose of disseminating information on this blood disorder. She is presently a member of the Thalassaemia Action Group University Hospital, Kuala Lumpur comprising of parents of thalassaemics and dedicated doctors.She can be contacted by e-mail at firstname.lastname@example.org. Further information on this disorder can be obtained from the various Thalassaemia Associations listed herein and readers are advised to consult their personal physicians before commencing on any form of treatment or management.