UoP mapping thalassaemic traits in children

On World Thalassaemia Day on May 8,a function was held at Ruby Hall Clinic where parents of thalassaemic children interacted with each other and shared their experiences in dealing with the problem. Awareness is one of the keys to combating this disease.

Thalassaemia major patients suffer form severe anaemia and the disease is life-threatening if untreated. The disease is inherited from parents. If only one gene of the inherited pair is defective,thalassaemia minor (trait) results,But if both the genes of the pair inherited from the father as well as mother are defective,the child is born with thalassaemia major.

Couples should test whether they have a thalassaemia trait so that their offspring does not suffer. In case both husband and wife are thalassaemics pregnancy should be monitored,Munshi said.

At UoP,molecular testing of thalassaemic children will be done to detect what trait he /she carries of the disease.

“Hence we can provide early intervention,” Munshi said adding that 50 children have been assessed so far. “We are appealing for free drugs to treat children,” Munshi said,pointing out that blood transfusions are free,but costly medicines are needed to remove excess iron from blood. These children need blood transfusions to survive,Munshi said.

Over 10,000 children born every year suffer from this problem where the bone marrow is not capable of producing RBCs (oxygen carrying cells in the blood).

“They require blood transfusion. However,due to multiple transfusions,they get an iron overload which requires treatment,” Munshi explained.

According to haematologist Dr Vijay Ramanan,blood transfusions vary from once in 8 days to once in 30 days depending on age of child.

“Blood transfusion is free,but there is a Rs 500 fee for special leucocyte filter. To remove excess iron,a chelating drug is given. This leads to a minimum monthly expense of Rs 10,000.”

The Thalassaemia Society requires funds as it takes care of over 300 children.

“Our three-point agenda is to fund chelation treatment by adopting thalassaemic children,conduct bone marrow transplant,and hold awareness programmes,” Munshi added.