Currently, 10,000 Pakistanis suffer from this genetic disorder but a few precautions can help reduce the number.
Doctors urge people to take the thalessemia carrier test, also known as a trait study before marriage, to prevent the rise of thalessemia majors. Every couple about to tie the knot will now have to undergo a blood test for thalessemia before their nuptials, according to a law passed in the Sindh Assembly on September 19, 2013.
Cousin marriages are the biggest cause of thalessemia.
Source: Dr Nasreen Qaiser, head of Community Medicine Department at Nishtar Hospital
Around 5% of the population is a carrier of thalessemia minor. Source: Ayesha Mehmood, spokesperson for FAiTh — Fight Against Thalassemia
To be safe, the antenatal test, known as the chorionic villous sampling, should be done after every 14 weeks of pregnancy to save the child from the possibility of thalessemia.
The estimated cost of an uncomplicated bone marrow transplant ranges from Rs1.8m to Rs2m. On average, the National Institute of Blood Disease & Bone Marrow Transplantation (NIBD) performs 3 bone marrow transplants a month.
Source: Dr Mahwish Taj at NIBD
At the Fatimid foundation, a blood transfusion can cost anywhere between Rs1,000 to Rs2,000. At other hospitals, the rates can go up to Rs5,000 to Rs10,000.
Thalassemia minors require less aggressive treatment or no treatment at all. They live a normal life and do not experience any particular symptoms. Due to a lack of both symptoms and awareness of the disorder, carriers do not normally have themselves tested.
For a bone marrow transplant, doctors prefer children under the age of 10 with a complete HLA (Human leukocyte antigen, a key part of the human immune system) matched donor.
Nearly 4,000 children in Pakistan are born with thalessemia major each year and currently there are 100,000 people suffering from this condition.
Source: Fatimid Foundation
For a thalessemia major, regular blood transfusions are required after every two to three weeks to survive. But a bone marrow transplant is the only complete cure.
Aga Khan University Hospital, Karachi
National Institute of Blood Diseases & Bone Marrow Transplantation (NIBD), Karachi
Pakistan Institute of Medical Sciences (PIMS), Islamabad
Published in The Express Tribune, Sunday Magazine, November 3rd, 2013.
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