The administrators and citizenry at large of the country are so preoccupied with some national and international issues- like Panama, terrorism etc.- that hardly some other genuine problems of the society make it to the national media or our public discourse. One of such overlooked issues is Thalassaemia- a rare genetic blood condition that, it seems, would cease to be rare if due attention not given.
Of all its types, the most detrimental is Thalassaemia Major that is genetically transmitted to an off-spring from his/her patients, who themselves are Minor Thalassaemics. A minor patient usually does not need any special medication like the Major patient, who has to get blood transfusion every fortnight, besides taking rigorous oral medicines and injections on daily basis. Moreover, the frequency of the transfusion may increase as the patient ages.
With transfusions on such regular basis, complications arise. For example, one of every three Major Thalassaemics is also a patient of Hepatitis B or C. Blood transfusion reactions are also very common. The irony is that despite the growth of modern technology, we are unable to give our thalassaemic patients screened and filtered blood.
According to the Thalassaemia Federation of Pakistan, the prevalence of this disease is 6% and more than 5000 Thalassaemics are born each year in Pakistan. Since this condition is genetically transmitted, it can only be controlled by spreading awareness among the masse; telling them to get tested before they marry, and if one is found to be a Minor patient, he/she shall not marry another Minor patient.
In a country like Pakistan, where there is already a dearth of volunteer blood donations and awareness regarding blood conditions, arranging blood for such patients is a highly difficult task. In summers, especially in Ramadans, patients have to arrange blood themselves as transfusion centers are unable to arrange camps. The agony these patients go through in such circumstances cannot be described in words.
To add insult to injury, our government and parliament are also reluctant to do any work in this regard. Some months ago, a bill was passed by the National Assembly regarding pre-marital tests of the relatives of patients of Thalassaemia Major. Recently, I came to know that the bill was awaiting endorsement for the past many months from any senator who can float it in the upper house by becoming its member in-charge.
It is my observations that thallasaemics are brilliant brains. Their intelligence is God-gifted. If properly treated, instead of becoming onus on the society, they can become asset of the nation. Our government, hence, must need to look towards amelioration of this marginalized group. Moreover, citizens at large are also requested to donate blood voluntarily-at least twice a year. There donations really make difference for the patients of Thalassaemia and their families.