8th of May is observed as the International Thalassaemia Day, the aim is to to spread awareness about the genetic disease. Thalassemia is a hereditary disease of the blood caused by genetic defects in the patient’s body which result in production of an abnormal form of hemoglobin, thus causing anemia. Of the three types of Thalassaemia, it is Thalassaemia minor that is perhaps the most dangerous for societal health: those carrying the gene often remain unaware of it, but the offspring of two carriers have an abnormally high chance of being born with Thalassaemia major.
Officials of the health ministry informed the Senate last year that there are about 100,000 patients with Thalassaemia major — they require regular blood transfusions — in the country, with an annual addition of 7,000 new patients. Regular blood transfusions are a lifelong necessity for persons afflicted by Thalassaemia major. The carrier rate has also risen to about six percent in Pakistan, and this figure could increase further if preventive measures were not adopted. The disease prevails because of marriages among close relatives, which reinforces the chances of children of parents with a similar genetic make-up being born with it.
The deadly disease could be counter by raising awareness regarding it, the most important step in this regard would be to ensure easy availability of Thalassaemia Screen Test for couples before marriage. In our society people are generally very reluctant to undergo such tests, but if we are to control this disease screening tests are absolutely vital. Media can play an important role to raise awareness regarding the issue, similarly it is the need of the hour to aware the children of such deadly diseases in schools and colleges.
Secondly as the kids suffering from Thalassaemia require regular blood transfusions it is necessary to encourage the culture of blood donation, which is sadly lacking in Pakistan. Blood donations save lives of millions of people every year that include Thalassaemia patients as well. Currently the ratio of blood donors in the country is way below the international average. We as a society must also play our part to treat these children as equals and give them every opportunity to pursue their dreams. After all these brave fighters are our HEROES.
There is an urgent need to raise awareness regarding the disease.