Thalassemia is an inherited blood disorder and can be simply stated as the inability of the body to produce an adequate amount of haemoglobin in the red blood cells. The result is severe anaemia. Children suffering from this blood disorder require a blood transfusion every month of their lives in addition to treatment for iron overload due to the excessive number of transfusions. The body of a thalassemic cannot produce red blood cells, which means a blood transfusion is required every 3-4 weeks.
In Pakistan, about 60,000 children are suffering from thalassemia major, the most common fatal genetic disease in the world. Supportive care for this disease is a huge economic burden on the affected families. Consequently, the majority of children do not live long. The cost of bone marrow transplant is equivalent to a few years of supportive therapy, but provides a definitive cure. There are great chances of returning to normal life for over 80% of children at low risk who have a compatible sibling. This treatment modality is therefore necessary from a medical, ethical and economical standpoint.
Scientists and public health officials predict that thalassemia will become a worldwide issue in the next century. With global improvements in childhood disease prevention and treatment, more focus will be given to diagnosing disorders.
It is our hope that by providing education about the disease we can raise awareness, encourage people to get tested, and spread knowledge about comprehensive treatment.
MARYUM BINT-E-MAZHAR
Karachi