According to rough estimates there were about 20,000 children suffering from haemophilia in Pakistan. In Karachi alone, there were 3,000 affected children, according to an NIBD estimate. “However, since there is no official registry in the country, we do not know the exact number of children affected by the condition.” said Ansari.
Haemophilia is a genetic blood disorder, explained Dr Ansari. The blood takes longer to clot after an injury. The first signs of the condition are usually discerned as soon as baby is born – prolonged bleeding after cutting the umbilical cord and also after the circumcision. If a child has frequent nosebleeds, bloody urine, bleeding gums or muscles, joint pain or swelling then there were chances that a child suffers from haemophilia.
The treatment usually involves injecting the missing clotting factors. But since they were not available in Pakistan, the patients are given Fresh Frozen Plasma (FFP). This is what remains after blood cells and platelets are removed from the blood itself.
According to Dr Ansari, ideally the children should receive concentrates of only the deficient clotting factors. In Pakistan, however, they usually don’t because it is too expensive. A single vial costs around Rs9,000 and three transfusions are needed per week.
This was why FFP was the preferred mode of treatment. But the problem was that the blood or plasma was often not screened properly.
Children receiving regular transfusions were at a great risk of being infected by hepatitis B, C or HIV viruses.
Ansari said that the condition also affected the children psychologically.
They developed anxiety, depression, obsessive compulsive traits, low self-esteem and drug dependency. Published in The Express Tribune, April 18th, 2012.