Dhaka Bureau: About 30 thousand children are dying every year in the country due to a rare disease called spinal muscular atrophy (SMA). But there is no system of detection and research for this disease in the country. Identification requires a genetic lab, which can be set up for around Rs 2 crore. Neighboring India has an SMA detection system. There is also research in that country. All genetic diseases have detection systems in India. SMA patients in Bangladesh have to be identified by sending samples to India. It takes a month to get the report. It costs Rs 20,000 to test it. However, doctors can think about this disease by seeing some symptoms even without testing. Patients with this rare disease die within two years of birth. However, if an injection is given, it is possible to save children suffering from this disease. However, the price of that one injection is 22 crore rupees. This injection, worth 22 crore taka, has been given to 2,300 children in the world, including Raihan of Bangladesh. One of whom died. Everyone else, including Raihan of Bangladesh, is fine. The Swiss company Novartis invented the injection for SMA disease. It is approved by the US FDA. This medicine was discovered after long research. The country’s expert doctors said that SMA is at the top of the list of children who die due to genetic diseases in the world. There is an urgent need to establish a genetic lab in the country to detect rare SMA diseases. Then those who can afford it can prepare to buy the injection. Even if there were genetic labs, it would be possible to detect whether a child is suffering from a rare disease while still in the mother’s womb.
SMA is a complex genetic disease. Children with this disease cannot sit or stand. But their intelligence is higher than normal children’s. But these babies die within two years of birth if left untreated due to respiratory tract infections and complications. It is a genetic disorder that essentially disables the nerves that line the motor neurons, causing the muscles that these nerves control to lose their function. Muscles that are normally functional in the body for breathing, eating, sitting, crawling, and, most of all, walking weaken and eventually become completely ineffective in SMA. One in every six to 10 thousand children in India is born with SMA. Doctors fear that the birth rate of this rare SMA disease will increase in Bangladesh. In 2017, the first child with SMA disease was detected in the country. Children from both rich and poor families can be affected by this disease. Three children in one family in the country are affected by this rare disease. So far, 60 to 70 children with SMA have been identified in the country. Since there is no testing system to detect the disease in the country, samples have to be sent abroad. Many spend two years trying to find and fund the testing. During this period, the child died. SMA type 1 is more dangerous and has a higher risk of dying. However, early treatment with physical therapy can be done if the disease is detected quickly. Expert doctors say that billions of rupees are being wasted in the health sector in the country. Many machines are being wasted without being used. A genetic lab would have made it possible to detect SMA while still in the womb. Then the parents could make mental preparations about the treatment.
Dr. National Institute of Neurosciences and Children’s Neurologist at the hospital is working on the rare disease SMA. Jobaida Parveen. He is the head of the hospital, professor Dr. Working under the leadership of Narayan Saha. And the director of the National Institute of Neurosciences and Hospital, renowned neurologist Professor Dr. Kazi Din Mohammad and joint director Professor Dr. Badrul Alam Dr. Zobayda Parveen said SMA disease needs to be detected quickly. Then the patient’s family can make financial preparations to get medical services.
Another one-year-old child in the country has been initially diagnosed with SMA. His name is Abiat Rahman. His sample was sent to India. The report can actually be fully confirmed. A child suffering from this disease has to take 22 million injections within two years of birth. A year has already passed for Abiat Rahman. If the injection is not taken within the next year, the child will die in front of the parents’ eyes. Abiat Rahman’s father is a government official. Talking to Ittefaq, he said, “I cannot accept that the child will die in front of my eyes due to a lack of money.” I could have saved my child if I could have given him an injection worth 22 crore rupees. But it is not possible for me to collect so much money. I want everyone’s cooperation on this.
Many children in this country, like Abiat Rahman, are suffering from a rare disease called spinal muscular atrophy (SMA). But many do not know about the disease. Raihan, a child from Manikganj, was affected by this rare disease. On October 25, the child’s body was injected with 22 crore rupees at the National Institute of Neurological Sciences and Hospital. Rayhan’s injection was given free of charge by the United States. The doctors of the National Institute of Neurological Sciences and the hospital said several children are suffering from this disease and are under treatment in our hospital. The report was sent to the United States after various tests, including blood tests on their bodies. Even children’s blood samples are sent there. Doctors in the United States selected Raihan after testing that blood. This drug has been marketed in the United States. Developed-world countries buy this medicine. The United States has chosen a lottery system to send a limited number of these drugs to poor countries. The Child Neurology Department of Neurosciences at the Institute of Advanced Specialized Hospitals in Bangladesh participates in this lottery. Raihan won that lottery. Rayhan’s physical condition is gradually improving, said Dr. Jobaida Shirin.
