Anum Khalid
Thalassemia, hereditary anemia of varying severity, is one of the foremost joint inherited disorders in Pakistan. it’s estimated that about 5000-9000 children with beta-thalassemia are born per annum, although no documentary registry is out there in Pakistan. The estimated carrier rate is 5-7%, accounting for 9.8 million carriers within the total population. The cultural and non-secular scenario in Pakistan is such consanguineous marriages are pretty standard. There’s no concept of premarital screening or counseling of individuals with a history of the disease. It is not necessarily that thalassemia happens in family marriages, it could happen to any couple by a process of gene spill.Furthermore, antenatal diagnosis isn’t widely available. The thought of termination of pregnancy still considers as an unethicalpractice and paganist issue within the community. With this state of affairs, thalassemia remains treated passively and archaically with all its inherent complications or by donating blood, resulting in death, unless a definitive treatment like bone marrow transplantation is administered, which itself is beyond the resources among an outsized segment of the population. The more anguish is, there is no registered data available of healthy blood donors or any blood donors. Most of the blood banks except RBC (Regional Blood Center) is doing exceptional job in safer blood transfusion.There is no concept of safe blood donation, still in Pakistan.Other by-product diseases like HIV, hepatitis B, and C also are also prevalent in Pakistan. People do believe in myths of donating blood. In developed countries, much attention has been directed to preventing disease by detecting thalassemia carriers and guidance. Using such a prevention program in Sardinia,13, the rate of thalassemia patients has decreased from 1:250 live births to 1:1000 live births. Similarly, in Cyprus,14, the incidence of Cooley’s anemia cases dropped by 96%. Within the present study, consanguinity was relatively high as compared to the survey done at Lahore, showing that 56.7% of the couples were first cousins and 19.8% were relatives.The results showed that 87.5% didn’t know that marriages within an equivalent family increased the danger of genetic transmission, which is comparable (80%) with a study done at thalassemia welfare center Rawalpindi.The only resource to preventing the disease and reduce morbidity and mortality is by educating the overall population about premarital screening of blood. For this reason, during this present study, awareness socially or on the bottom among parents of thalassaemic patients and therefore the entire ethnic communities regarding the disease is a dire need. Thalassaemias are a heterogeneous group of genetic disorders of human hemoglobin synthesis characterized by imbalanced globin chain production, resulting in ineffective erythropoiesis and anemia. it’s a controllable disease to till eradication of the syndrome. The management of Cooley’s anemia in a developing country poses an enormous challenge to the health services.Lack of health facilities and coordination to the present multidisciplinary problem make the treatment difficult in a sort of ways. Lack of awareness about the disease among the caretakers and therefore the unavailability of antenatal diagnosis interweaves the thalassemia. Bone marrow transplantation is out of reach for several parents thanks to financial constraints. Therefore, conservative or passive treatment remains the selection in developing countries like Pakistan (blood donation). Parental awareness regarding various aspects of beta-thalassemia is of great importance not only for the prevention of Cooley’s anemia within the family but also for the proper management of thalassaemic children. Awareness concerning blood donation to thalassemia patients is additionally a big challenge in Pakistan. Removal of ethnicity to consanguineous marriages to eradicate thalassemia features a significance of real god but it could be resolved by sheer pre-testing of blood. Awareness is the only action against this massacre and using the traditional rules to empower the existing system for the thalassemia community. The remainder of the part is awareness at the huge national level and global level about this undeniable prevail of controllable disease in Pakistan like polio. To watch out the documentary, please do click on the link. https://youtu.be/WgN4dQfYKa4
