Dhaka: Md Amir Uddin and his wife Sohely Akther, both bankers by profession, were living a happy life with their two children, Raj, 7, and Jhilmil, 5. However, recently, Raj showed a lack of interest in playing with his sister or other children and appeared tired. When Raj fell ill, his parents took him to a doctor, who diagnosed him with Thalassemia, explaining that this was the reason for his lethargy.
According to Bangladesh Sangbad Sangstha, Thalassemia is the most prevalent congenital disorder in Bangladesh, with an estimated 7,000 children born with the disease each year. On May 8, 2024, World Thalassemia Day was observed in Bangladesh and globally to raise awareness about the disease, under the theme "Empowering Lives, Embracing Progress: Equitable and Accessible Thalassemia Treatment for All."
Dr. A Wakar Khan, president of the Thalassemia Center at Dhaka Shishu Hospital, highlighted that Thalassemia not only affects children physically but also poses psychological and social challenges for families. He emphasized the importance of genetic testing for couples before planning a child to prevent such lifelong challenges.
Experts have raised concerns over the increasing number of Thalassemia patients in Bangladesh and have advocated for blood testing before marriage as a preventive measure. Dr. Md Aminul Islam, an adviser at Bangladesh Thalassemia Foundation, mentioned various initiatives undertaken to combat the disease and stressed the media's role in raising awareness.
Citing the World Health Organization, Dr. Aminul noted that approximately seven percent of Bangladesh's population are Thalassemia carriers, and 7,000 children are born with the disease annually. He also referenced the International Thalassemia Federation, which estimates around 60,000 individuals in Bangladesh carry the disease. Affected patients require one or two blood transfusions monthly to survive.
Blood disease expert Professor Dr. Monzur Morshed pointed out the shortage of skilled personnel and medical equipment needed to treat Thalassemia patients. Dr. A Wakar Khan explained that Thalassemia is preventable, occurring only when both parents carry the gene. In such cases, there is a 25 percent chance of having a child with Thalassemia in each pregnancy. He stressed that if either partner is healthy, the children will not be affected.
Dr. Khan further elaborated that Thalassemia is an inherited blood disorder that impairs children's growth and weakens them. Avoiding marriages between two Thalassemia carriers can prevent the disease in children. He described how children with the disorder suffer from oxygen deficiency due to low hemoglobin production, leading to weakness and reduced stamina. The excess iron from broken down red blood cells affects various body parts, causing immobility and additional complications.
Dr. Khan noted that the liver and spleen can become enlarged due to the disorder, with expensive medication required to remove excess iron. While bone marrow transplantation can cure the disease, its high cost remains a barrier. He concluded that children who carry the Thalassemia gene but are not affected can lead normal lives.