Abstract:
Sri Lanka does not have a National preventive programme for Thalassaemia . Nevertheless,
the government spends 5 percent of total health budget (which is a huge amount for a single
disease) for the management of thalassaemics and every year around 100 patients are newly
identified. Study-findings reveal that the parents of thalassaemics had a moderate
knowledge about the disease and treatment and had a good knowledge about the
prevention of the disease. They will be a good resource for future preventive programmes .
Knowledge level was significantly associated with Sinhala ethnicity, Buddhist religion and
with higher level of education. Nevertheless, knowledge about the bone marrow transplant
as a mode of permanent cure was poor. Economic constrains was the main problem
associated with defaulting treatment. Twenty-four parents (10.70/1 had more than one
thalassaemic child and the main reason given for that was the inadequate counseling
received. It is highly recommended to establish a National Thalassaemia preventive
programme. Pre-marital testing of the carrier status should be advocated and necessary
facilities should be made available. counseling of the parents of newly diagnosed
thalassaemics should be established as a routine practice and details about all the methods
currently available locally and globally should be conveyed to them in their mother tongue.
ligation of internal iliac arteries; Post partum ligation and resection of tubes; Prim
