May 8 is observed as the World Thalassemia Day globally. Bangladesh Thalassemia Foundation, Sandhani, Medicine Club, and Platform observed the day by creating public awareness online in the context of the Coronavirus epidemic. This year’s theme is “Thalassemia prevention should start from the youth, blood screening before marriage will protect the future generations”. Hon’ble Prime Minister of Bangladesh has given a message on the occasion of the day.
According to the World Health Organization, 7% of Bangladesh’s population, i.e. about 11 million people, are carriers of thalassemia. Every year, 7,000 new children are born with thalassemia due to the marriage between thalassemia carriers.
The keynote was presented by Prof. Dr. Manzoor Morshed. He said, “Thalassemia is a genetic disease of the blood. Patients with thalassemia do not make enough iron in their bodies. As a result, they get severe anemia. Thalassemia patients survive by receiving 1-2 bags of blood every month. If left untreated, the patients die of anemia. Human cells have two genes for making blood. A person with a defect in one of the genes that make blood is called a thalassemia carrier, and a person with a defect in both genes is called a thalassemia patient.
Thalassemia is diagnosed within 1-2 years after birth. Symptoms of this disease include anemia, weakness, frequent infections, not gaining weight in the baby, jaundice, irritable mood, etc. There is no readily available treatment or vaccine for thalassemia. The only way to get rid of this disease is prevention. If both husband and wife are carriers of thalassemia, only then their children get the disease. But if one is a carrier and the other is healthy, the disease will not happen. So everyone needs to know before marriage if they are carriers of thalassemia. A blood test called hemoglobin electrophoresis can determine if a person is a carrier of thalassemia.
Hematologist Dr. Jannatul Ferdous said in the discussion, “Today’s youths are the shapers and guardians of the next generation. If the young people of this country are aware of the prevention of thalassemia, then we will see the benefits in the next generation.”
Dr. Abdur Rahim, Secretary-General of Bangladesh Thalassemia Foundation, said that Thalassemia Foundation Hospital continues to provide services to the patients even during this catastrophic time of the Coronavirus epidemic. At present, 3,205 registered patients are receiving regular medical services at the hospital. From this hospital, free medical aid is provided to the poor and destitute patients. In 2019, 522 patients were provided free medical services throughout the year. Fundraising patients are treated with year-round subsidies by raising money through the Foundation’s benevolent donors, corporate contributions, zakat, poor funds, the ‘Sponsor a Child’ program, etc.
The Thalassemia Foundation raises awareness among young people about the disease through awareness seminars at colleges and universities. It organizes seminars and workshops for different levels of health workers including doctors and nurses. It also raises awareness through print and social media campaigns. As a result of the Foundation’s demand, the government has started providing Tk. 50,000 per person from this year onwards for the treatment of cancer, kidney, liver cirrhosis, and thalassemia patients across the country under the Ministry of Social Welfare’s Support Service for Vulnerable Group (SSVG) project.
Dr. Aminul Islam, Joint Secretary to the Government and Adviser to the Foundation, said, “The Foundation undertook various programs on the occasion of the Mujib Year. With the theme – ‘Let’s make a firm commitment to preventing Thalassemia in Mujib year,’ the foundation will organize awareness seminars on the prevention and treatment of thalassemia in 64 districts with the support of ministries and departments, print and electronic media houses in the country. Free thalassemia screening will be conducted at these events in collaboration with the Department of Health. A 100-bed specialized thalassemia hospital will be set up to ensure proper treatment of thalassemia patients. The hospital will provide free treatment to poor and helpless patients.”
Patron of the Foundation and a former secretary to the Government Ms. Aktari Mumtaz said, “Bangladesh Thalassemia Foundation has been working relentlessly since 2002 to improve the quality of life of thalassemia patients. As the number of patients and the quality of service of this hospital have increased, the help and cooperation of the government and the general public have also increased significantly.” She opined that the theme adopted on this year’s World Thalassemia Day was very much appropriate, and she urged the youth to come forward to prevent the disease.
With a view to aware the youth, an online video conference was organized. The conference was attended by Ms. Aktari Mumtaz, former secretary to the government and patron of the Bangladesh Thalassemia Foundation; Dr. Habibur Rahman, Line Director, Non-Communicable Diseases Prevention Program (NCDC), Department of Health; Distinguished Hematologist and Advisor to the Thalassemia Foundation, Prof. Dr. Manzoor Morshed; Dr. Md. Aminul Islam, Joint Secretary to the Government and Adviser to the Foundation; Dr. Md. Abdur Rahim, Secretary-General of the Foundation; Hematologist and Associate Professor Dr. Jannatul Ferdous, Sandhani President Tanvir Hasan Iqbal; Medicine Club President Md. Arman Hossain; Platform President Dr. Niloy Shuvo, thalassemia patient representative Ahona Ferdous; the patient’s guardian representative Md. Rashidul Haque and many others. The conference was moderated by Dr. Tareq Salahuddin.
Besides, in view of the day, Bangladesh Thalassemia Foundation has organized various awareness campaigns on various social networks and media targeting the youth.
