ISLAMABAD - Every year 5,000 to 8,000 babies are born with thalassaemia major disease, whereas more than 10 million are carriers of this disease.
Thalassaemia is not cancer but its treatment is more painful and complicated than cancer. Pre-marital screening for thalassaemia can avoid thalassaemia major children births as it can be prevented if two thalassaemia carriers avoid marriage.
These figures and views were voiced by experts at a seminar organised by Thalassaemia Awareness & Prevention in Pakistan (TAPP) in collaboration with Islamabad Diagnostic Centre, Pakistan Institute of Medical Sciences (PIMS), Cure 2 Children, AJM Pharma and Tahzeeb Bakery to celebrate the World Thalassaemia Day (8th May) on Wednesday.
Thalassaemias are a group of hereditary blood disorders with a characteristic defect in red blood cells that leads to their absolute or relative deficiency in the body, eventually making the patient transfusion dependent and encompassing a lifelong set of fearsome complications.
Managing Director Pakistan Bait-ul-Mal (PBM), Barrister Abid Waheed Shaikh, on the occasion said, "No doubt if we want to solve the problems, PBM, NGO and philanthropists should work together and play their key role in thalassaemia eradication.
He said, "We have decided that underprivileged patients will get instant, financial support from PBM. Cancer, kidney transplant, cardiac diseases and thalassaemia should get prompt and free treatment facilities."
In a country like Pakistan, with poor health delivery system and resources, spreading awareness regarding prevention of the disease, teaching the people about family screening for the trait, genetic counselling and interventions are the responsibilities of all.
President TAPP Ayesha Abid said, "Thalassaemia is in all pockets of Pakistan and Punjab Thalassaemia Prevention Programme, Ganga Ram Hospital, is an excellent step by the government and we wish such programmes should be launched in other areas of the country to make thalassaemia free Pakistan. Its treatment is very costly and painful, whereas prevention is very economical and easy."
Dr Naila Yaqub, assistant professor paediatrician at PIMS, made a plea while saying a woman with haemoglobin less than 12 g/dl and man with haemoglobin less than 14 g/dl should make it confirm that they are not carrier of thalassaemia .
She further added that the only solution to the misery is bone marrow transplant which is costly and out of the reach of families. The results of bone marrow transplant are amazing in children less than 5 years of age who are well managed by their parents before transplant. This group of children with low risk have 90 per cent chances of successful transplant in Pakistan.
Thalassaemia is an inherited blood disorder. The genes received from one's parents before birth determine whether or not a person will have thalassaemia . Thalassaemia cannot be caught or passed on to another person.
In the end MD PBM distributed gifts and prizes among patients.
In Lahore, Post Graduate Medical Institute arranged a walk to mark the event. Principal PGMI Prof Anjum Habib Vohra, Dean Children Hospital Dr Masud Sadiq, Project Director Thalassemia Control Program Prof Shamsa Humayun, Prof Agha Shibir Ali and Prof Fouzia Farzana led the walk largely attended by faculty members, students and people from various walks of life.
Talking to the media on the conclusion of the walk, Prof Anjum Habib Vohra said that thalassemia is an inherent disease which can only be controlled through vigorous awareness campaign duly supported by practical steps.
“This disease can be eradicated if a couple goes through thalassemia screening before marriage. There are thousands of children in Pakistan suffering from thalassemia needing blood transfusion permanently”, the experts said.
They said that if the man and woman both were suffering from thalassemia minor, their kids could be a victim of thalassemia major. Therefore, they stressed, thalassemia screening prior to marriage must be made compulsory. They said that Punjab Assembly has already promulgated a law in this regard.
They said that thalassemia was not an infectious disease but it only come through blood. They further said that only 4.4 percent couples in Pakistan belong to different casts and families otherwise most of the girls and boys to be married are cousins which is a basic reason for at least 20 percent newborn babies having such diseases. They emphasized the social organizations, media and religious scholars to come forward and play their due role for sensitizing public in this regard.