Ghulam Ali, 49, appears distressed in the lounge of Kashif Iqbal Thalassemia Care Center as he waits for his son Abbas Ali’s turn to meet the doctor.
Abbas, 11, has thalassemia major and he has been receiving blood transfusion since he was one year old. Ghulam was unhappy because he himself is a thalassemia minor, his wife Reshma who also has the same condition married him because of family pressure; the couple now regrets their decision.
“At that time there was no awareness about thalassemia nor were there counseling options for the couples getting married,” Ghulam said.
A person who has thalassemia minor is called its carrier. Marriage of a carrier to a non-carrier will not result in thalassemia major. The births of children with thalassemia major can be avoided by premarital carrier screening and avoiding marriage between two carriers. The carrier couples who are already married can be offered prenatal diagnosis and selective termination of pregnancy if the fetus is found to be affected.
Pre-emptive measures can be used to control thalassemia. A number of countries do not permit marriages without medical certificates whereas and around 5,000 children are born with thalassemia major every year in Pakistan.
The thalassemia patients need blood every fifteen 15 days and there are 80% of the youth in Pakistan who donates blood for this purpose. A single pint of blood is used for saving three lives altogether. FFP (Fresh Frozen Plasma) for heart surgery patients, Platelets for leukemia and dengue patients, normal blood for thalassemia patients.
The life that most thalassemia patients go through is painful but the death that they have is even more excruciating.