Kathmandu, May 8

Of the nearly 600 children in the country surviving with thalassemia, only 260 children are getting proper treatment.

According to the recorded data of Nepal Thalassemia Society, only 125 children are following regular treatment and getting blood transfusion. “Thalassemia is a genetic disorder in which the production of normal haemoglobin is partly or completely suppressed because of defective synthesis of one or more globin chains.  It is hereditary, passing from parents to children.

In Nepal it is called apusta raktakosh, meaning ‘not well developed blood cells’,” said Durga P Pathak, president of Nepal Thalassemia Society.

Each year, 60,000 to 70,000 children in the world are born with Thalassemia Major. Pathak informed that there is no exact data recorded in the case of children suffering from Thalassemia. Earlier, the government did not recognise such diseases in the country. “There are 260 Thalassemia patients in contact with Nepal Thalassemia Society, but among them, only 125 come for treatment regularly.”

Children are dying due to lack of early diagnose of this disease, while most of the parents quit treatment as they cannot afford long-term medication for their children. “Children with the disease have to get blood transfusion for lifelong survival. Bone Marrow transplant can be better treatment for such children.”