Pakistan, a country with a total population of nearly 180 million people has a high infant mortality rate. About one in ten of all childhood deaths in Pakistan are due to thalassemia. There are approximately nine million carriers of beta-thalassemia, resulting in more than 5000 transfusion dependent births every year. Ignorance of this matter has devastating effects therefore the sooner we realize the significance of the mentioned figures, the better it is.
Thalassemia is an inherited blood disorder caused by weakening and destruction of red blood cells. According to different research, up to 70% of all blood collection in Pakistan is given to children with thalassemia, which means majority of collected blood is set aside for a problem that can easily be prevented. The symptoms of thalassemia major include paleness, headaches, shortness of breath, fatigue, jaundice and spleen enlargement.
People with thalassemia major are at great risk for acquiring various blood borne infections due to the need for frequent blood transfusions. Moreover the problem is considered huge because the person is dependent on blood transfusions for his/her lifetime.
It is common to see thalassemia patient dying before age of 25 years, either due to lack of availability of blood for transfusion or due to transfusion-acquired disease. Depending upon various factors, a thalassemia major patient requires blood transfusion every 15 days or approximately after a month. Thalassemia also poses a huge financial burden for the family or the various institutions providing treatment to such patients.
Numerous blood donation campaigns are run in Pakistan and thus blood is collected with untiring efforts by individuals and institutions. Using this scarce recourse for a disease that can be prevented definitely is not wise planning. Thalassemia can be prevented if only a blood test (of both partners) is done for the trait before marriage or when a person reaches a marriageable age.
Beta-Thalassemia is one of the most common inheritable genetic disorders in Pakistan with a very high regional and geographical prevalence of the disease due to widely accepted norm of inter-marriages amongst close family relatives and members of the same caste or tribe. So actions have to be taken to make the test for thalassemia trait mandatory for all individuals prior to marriage. Apart from this, another option available is a test conducted on the expecting mother during pregnancy.
If the findings of the test show the presence of thalassemia, abortion is opt by some parents. However, this approach is considered highly controversial as people have varied religious, personal and ethical views.
Considering all this, still the state of thalassemia in Pakistan is not completely depressing as steps have been taken to address this issue. Initiatives have been taken to spread awareness through various tools like advertisements, seminars, conferences, blood donation booths, brochures distribution and so on.
There is a great need of having more focused and planned activities to generate awareness and to make people adopt the behavior, which is of having the tests. For example, considering that the university students are at the age of getting married, activities should be conducted in campuses. For this, the activities should not be planned on assumptions but the basis must be on strong research to know about the mind set, life style, readiness to change and so on. But keeping in mind the diversity, separate research based on demographic, geographic, psychographic and other relevant factors would help to design impactful activities for every different set of audience.
To address the issue holistically, the activities should incorporate three areas i.e. first, informing about thalassemia and its cause, second, collecting blood for existing patients and third, informing people about thalassemia screening tests for preventing the disease in future.
Thalassemia can be eradicated from our society if activities on mass level are conducted.
Regardless of the size of the figures, we must realize the value of every single human life and must play our role. Thinking of the minute awareness level of the illiterate (majority of Pakistan’s population) and their access to knowledge, responsibility lies more on you and me as you were able to read this article and I was able to write.
