Thalassemia on the rise in Pakistan

International Thalasseamia Day is observed every year on 8 May to victims of the disease and to encourage those who are battling to live with it. It is blood- related genetic disorder involving the lack of faults in genes responsible for the production of haemoglobin, a protein present in the red blood cells. The disease has wide- spreading effects on the human body like iron overburdened, bone distortions and can even cause heart disease in serious cases. Thalassaemia has no remedy and patients require regular blood transfusions as a powerful measure to extend life. The intensity of the disease relies on the variations involved in the genes and their interaction. The alpha and beta thalassaemias are the most normal inherited single-gene disorders in the universe. India is one of the worst parts of all affected countries with excess than four crore thalassemia carriers and over one lakh thalassaemia dominants under blood transfusion every month. Above one lakh thalassemia patients across the country die before they turn 20 owing to absence of access to treatment. Every year more than 10,000 children with thalassaemia significant are born in India and thalassaemia patients are not intentionally passing on the genetic disorder to their children. The trend can be checked if couples bear thalassaemia screening before marriage. A simple blood test for thalassaemia before marriage will let couples know if they are carriers or not. If both are non-carriers, they need not worry. But if both are carriers, they may either decide not to have any children or go for a test called amniocentesis within the first 12 weeks of pregnancy to detect if the child is affected or not.
Government of Pakistan urged to declare 2019 as thalassemia awareness year. The Help International Welfare Trust in collaboration with the Memon Professional Forum organised the event at Rangoonwala Hall. Federal and all provincial governments must declare 2019 as the year of Thalassemia-free Pakistan campaign on government level. They called for large awareness publicity on different epidemic diseases besides the Thalassemia, so that such complex diseases could be controlled and valuable human lives could be saved. They stated due to illiteracy, the large numbers of people are not well aware of diseases and as result of that a number of people especially children are suffering from the very disease.
Thalassemia test now is necessary before marriage. The Compulsory Blood Test of the Spouses and Proposed Spouses for Thalassemia Disease Bill, 2018 was introduced in the Senate. The bill was referred to the standing committees concerned; consequently which it will be accepted. Thalassemia is on the increase in Pakistan where lack of knowledge and ignorance continues to complicate the problem. It is a hereditary condition of blood, influencing the red blood cells that leads to their complete insufficiency in the body and finally makes the patient transfusion reliant for the rest of life. Pakistan has an assumed carrier rate of about 8 to10 percent which is approximately ten million people of Thalassemia Minor whereas yearly about 6 to 8 thousand children are born with the fatal disease of Thalassemia Major. Persistent survival of the impacted individuals relies on regular blood transfusions on one time two fold monthly basis; consequently it is the greatest burden on Pakistan transfusion centres. Thalassemia is an inherited blood disorder. The genes received from one’s parents before birth determine whether a person will have Thalassemia. It cannot be captured or go on to another person. This cheap test can save future creation from lifelong era of Thalassemia major disease.
Punjab Health Department has drafted for prevention of the blood disease. All males residing in the country would have to go through testing for their Thalassemia position before marriage. In the event the male is diagnosed as Thalassemia minor, the would-be spouse would also have to face screening. Under the bill, a couple having Thalassemia gene in one individual could marry but if both are Thalassemia carrier, then they would be recommended to carry pre-natal test during the beginning stage of pregnancy to evade birth of a Thalassemia child. To the current Nikkah-nama are also suggested in the draft Thalassemia Bill 2018.The Punjab government would provide all accessible resources for the prevention of the dastardly disease. It announced that about 330 children of the thalassemia centre will be shortly being invited to the Police Lines Headquarters for a tour.
In spite of suffering from comparatively higher rates of the genetic blood disorder, with approximately 6 percent of Pakistanis having thalassaemia minor, there is little knowledge of the condition among the general population. Thalassaemia is a DNA change inborn from at minimum one parent which causes unbalance in haemoglobin levels, with some children developing symptoms at birth and others during the first two years of life. Some of the symptoms include exhaustion, feebleness, light or yellowish skin colour, facial bone deformities, sluggish growth and development, and abdominal enlargement. As reported, about 5,000 to 7,000 babies are born with thalassaemia each year in Pakistan. Patients require normal monthly blood transfusions and chelation therapy to remove abundant iron from their bodies. This is not only a severe procedure for a child to endure, with its share of side effects; it is also exceedingly expensive for the parents. The median Pakistani citizen simply cannot afford such expensive healthcare.
In some way to face high rates of thalassaemia is to make premarital blood screening obligatory. If any gets married to another, there is a higher possibility of their child being born with thalassaemia major. This is common in Pakistan where cousin marriages are customary. Iran has been able to check the disorder fortunately through extensive thalassaemia prevention programmes. In Iran all couples wishing to marry are required to take blood screenings before being given their marriage certificate. Pakistan should take the example of its neighbour Iran.

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