Dealing with thalassaemia

Pakistan is among countries burdened with thalassaemia – a blood disorder. There are around 100,000 patients of thalassaemia major in the country and every year more than 5,000 children are detected with the dreaded illness. Unfortunately, treatment facilities in the country are lagging far behind the high incidence of the disease.

Southern Punjab is among the regions that badly need a government facility for the treatment of thalassaemia major, given the growing number of patients there. The Punjab government had approved a thalassaemia treatment centre at Bhawalpur Victoria Hospital in 2009, but it has been inordinately delayed due to red tape. At the centre, facilities for bone marrow transplant were also to be set up. Bone marrow transplant from a compatible related donor is the only cure for thalassaemia. However, this treatment is quite expensive and most people cannot afford it. If not provided with bone marrow transplant in the teenage, children suffering from thalassaemia major need blood transfusion every 15 days to survive, and the process is life-long. There is need for the authorities to ensure completion of the treatment centre at BHV as early as possible, and set up similar facilities wherever there is an urgent need.

Thalassaemia is of two types: thalassaemia minor and thalassaemia major. While thalassaemia minor is a harmless genetic condition, children born from wedlock where both man and wife are suffering from thalassaemia minor have a 25% likelihood of developing thalassaemia major. And while thalassaemia major is only treatable through a bone marrow transplant, it can be prevented. Men and women should get themselves tested for thalassaemia minor before marriage. If both are tested positive for thalassaemia minor, they should not marry each other. One important cause for the prevalence of thalassaemia major in Pakistan is consanguineous marriages. Here the test for thalassaemia minor is of great help. Many countries have successfully eradicated this disease by making this test mandatory for marriage.

Published in The Express Tribune, April 15^th, 2022.

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