Thalassaemia remains the most common single
gene disorder in Malaysia. 5% of its population are carriers of 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 excessive iron load in their bodies. Too
much iron can damage the normal function of the vital organs and if left
untreated, 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 treament 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 the 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
The association at University Hospital has just been approved by the Registrar of Societies and the name is now changed to Thalassaemia Society of University Hospital (THASUH).
Further information on
this disorder can be obtained from the various Thalassaemia Associations listed herein. Readers are advised to
consult their personal physicians before commencing on any form of treatment or
Please read our DISCLAIMER
For those interested in serious reading on thalassaemia, an article is included
beta-thalassaemia in Malaysia by Professor Elizabeth George, Professor, Unit
Hematology, Department of Medical Laboratory Sciences, Faculty of Medicine,
University Putra Malaysia, 43400 UPM, Serdang, Selangor.
Tel: (0ffice) 89466000 Ext 8498
Queries on this article can be directed to her at mailto:firstname.lastname@example.org or mailto:email@example.com