Learn how pre-marriage blood tests can prevent Thalassaemia, a common congenital disorder in Bangladesh. Discover the importance of genetic testing, awareness initiatives, and expert insights on managing and preventing this inherited disease.
The Story of Prasanta: A Glimpse into the Challenge of Thalassaemia
DHAKA, May 27, 2024 (BSS) – Rahul Dey and his wife Promita Rani, both bankers, were leading a happy and fulfilling life with their two children, Prasanta, 7, and Jhorna, 5. Their family was close-knit and joyful, often spending time together and engaging in various activities. However, recently, Prasanta started showing signs of fatigue and disinterest in playing with his sister or other children in their building. His parents were initially puzzled but became concerned when he complained of feeling unwell.
They took Prasanta to a doctor who, after several diagnostic tests, revealed the disheartening news: Prasanta was diagnosed with Thalassaemia. This congenital blood disorder was the reason behind his fatigue and inability to engage in physical activities like other children.
The Prevalence of Thalassaemia in Bangladesh
Thalassaemia is the most common congenital disorder in Bangladesh, with an estimated 7,000 children born with the condition each year. This genetic disorder is a significant public health concern, affecting not only the patients but also their families psychologically and socially.
On May 10, World Thalassaemia Day was observed globally, including in Bangladesh, with the theme “Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All.” The day aims to raise awareness and educate people about this debilitating disease.
The Importance of Pre-Marriage Blood Tests
Medical experts in Bangladesh are increasingly emphasizing the importance of pre-marriage blood tests to prevent Thalassaemia. Dr. A Wakar Khan, President of the Thalassaemia Center at Dhaka Shishu Hospital, stressed that genetic testing before marriage is crucial. He highlighted that Thalassaemia not only impacts children but also causes long-term psychological and social problems within families.
Dr. Khan explained that Thalassaemia is an inherited blood disorder that impedes children’s growth and causes severe weakness. The disorder is passed on when both parents carry the Thalassaemia gene, with a 25% chance of their child being affected. However, if one parent is healthy, the children will not develop the disease.
Efforts to Combat Thalassaemia
Bangladesh Thalassaemia Foundation (BTF) Adviser Aminul Islam noted the organization’s initiatives to prevent the disease. He emphasized the need for increased awareness and the critical role media can play in disseminating information. According to the World Health Organization (WHO), about 7% of Bangladesh’s population are carriers of the Thalassaemia gene. The International Thalassaemia Federation estimates that around 60,000 people in Bangladesh have Thalassaemia.
Thalassaemia poses a severe financial burden on families, often turning wealthy individuals into paupers. Patients require regular blood transfusions, typically one or two units each month, to survive. Aminul Islam announced plans to form a volunteer group with 10,000 blood donors to support these patients.
Challenges in Thalassaemia Treatment
Blood disease expert Professor Dr. Monzur Morshed pointed out the shortage of skilled medical personnel and equipment necessary to treat Thalassaemia patients effectively. Dr. Khan added that Thalassaemia is preventable if marriages between two Thalassaemia carriers are avoided. He explained that children with Thalassaemia suffer from oxygen deficiency because their bodies cannot produce enough hemoglobin. This results in weakness, loss of stamina, and complications from iron accumulation in various body parts, leading to immobility and organ enlargement.
The cost of medication to remove excess iron is prohibitively high. While bone marrow transplantation can potentially cure Thalassaemia, it is extremely expensive and not accessible to many families in Bangladesh.
The Way Forward: Raising Awareness and Education
The case of Prasanta underscores the urgent need for comprehensive measures to combat Thalassaemia in Bangladesh. Raising awareness through media campaigns, community outreach programs, and educational initiatives is vital. Couples should be encouraged to undergo genetic testing before marriage to identify carriers of the Thalassaemia gene and make informed decisions about family planning.
Healthcare infrastructure must be strengthened to provide adequate support to Thalassaemia patients. This includes increasing the number of skilled healthcare professionals, enhancing medical facilities, and ensuring the availability of essential equipment and medication. The government and non-governmental organizations should collaborate to make treatments more affordable and accessible.
Conclusion
Thalassaemia remains a significant public health challenge in Bangladesh, affecting thousands of children like Prasanta every year. However, with concerted efforts in awareness, prevention, and treatment, the impact of this disease can be mitigated. Pre-marriage blood tests play a crucial role in preventing the transmission of Thalassaemia and ensuring healthier future generations. As awareness grows and healthcare systems improve, there is hope for a future where Thalassaemia is effectively managed and ultimately prevented.
