Account on Thalassaemia in Sri Lanka

Thalassaemia is an inherited genetic blood disorder. When two parents
with Thalassaemia Trait ( half thalassaemics ) marry a Thalassaemia major child could be born. There are nearly 4000 Thalassaemic children and 500,000 Thalassaemia carries
( traits ) in Sri Lanka

Thalassaemia Major children need blood transfusions monthly , from five months of birth onwards , lifelong. Due to complications from iron overload from these monthly blood transfusions they die at a very young age. The eldest child alive in the Eastern Province of Ampara is only 17 years ! Most die in their late twenties. . Upto now there has been no known cure

The main cure available today for Thalassaemia is Bone Marrow Transplantation (BMT) from matching donor siblings , invented in the 1980′s, by Prof. Guido Lucarelli , Director , Mediterranean Institute of Haematology , ROME , ITALY. When I met him in Rome in October 2012 he spoke of the possibility of setting up a bone marrow transplantation centre in Sri Lanka . Although unknown in Sri Lanka , this treatment modality has been in existence in Europe for the last 30 years & in India for 15 years

We have recently formed an organization , called the “ Lanka Thalassaemia Circle” , comprising of Thalassaemia patients , their parents & well-wishes, membership around 3000 , to fight for the neglected rights and to institute a definitive bone marrow treatment for these Thalassaemic children.

The government spends over Rs. 800,000/- per child annually , who will invariably die at a young age , only for medication and the annual drug bill costs Rs. 1700 Million. It is time to start treating this fatal disease with generating awareness , mainly by the media, of the health professionals & the general public

I enclose details on the disease & the progress made so far by the “ Lanka Thalassaemia Circle” in thalassaemia cure , in the adjoining article . I will e-mail you photographs if requested