Thalassaemia threat

The Thalassaemia International Federation marks May 8 each year as World Thalassaemia Day. The purpose is to raise awareness about the disease and how it can be prevented. This awareness is especially important in Pakistan, which is one of the regions of the world where thalassaemia is a prevalent disease with about 100,000 people thought to be currently suffering from the disease, many others undiagnosed, still others seen to be carriers of the disease and 5000 infants born each year with thalassemia. The disease is essentially genetic which occurs when two parents who carry the thalassaemia gene marry each other and have children. In some cases, one could be a dormant carrier of the disease. Therefore, testing is vital to establish if it is safe for that person to marry another and that this will not create an infant who suffers from thalassaemia. The fact that thalassaemia runs in families and that marriages within families are particularly common in our society adds to the problem. There have been suggestions that mandatory genetic testing be imposed for marriage to try and cut down the cases of thalassaemia. But others argue that this may be unacceptable to families and the best way is to create greater awareness about the disease and how it can best be prevented.

Children who suffer thalassaemia in some cases need frequent blood transfusions in order to heighten the low haemoglobin in their blood and to allow them to function normally. In many cases, patients of thalassaemia do not live beyond their 20s but the better treatments around the world are pushing this age limit forward. In our country, which like the Middle East, the Mediterranean and Southeast Asia has a high rate of thalassaemia, awareness is something that must be created and developed. World Thalassaemia Day gives an occasion for forums and seminars to be held. But we need to move beyond this point. In the first place, constant awareness about the disease is important. Only when people understand the reason for thalassaemia and with it other similar blood borne diseases, will they be able to comprehend the problem and deal with it in a sensible fashion.

It is important, however, that we bring down the rate of thalassaemia as quickly as possible, especially given the problems in our country with the provision of blood to thalassaemic patients. In many cases, screened blood is hard to find and there are insufficient donors willing to come forward and to provide for those with the disease. Only infusions of blood can keep these young patients alive. The day is a reminder of the need to tackle thalassaemia effectively and efficiently so that we can lower our health cost burden and also the trauma and burden on patients and their families.