Chairman of the management board of Bangladesh Shishu Hospital and Institute and president of Bangladesh Society of Medical Genetics Professor Dr. Mohammad Sahidullah on Sunday said the recovery of incurable disease Spinal Muscular Atrophy (SMA) is possible in the country at low cost.
"Currently the treatment of this disease has started in the country. Still its treatment and medicines are very expensive. Our medical system is much better than before. With the planning and goodwill of the government and the wealthy people come forward, it is possible to prevent incurable diseases like SMA," he said.
He said this at an event titled 'Advances in the Treatment of Spinal Muscular Atrophy (SMA): SMA is Curable' was organized at Shisju Hospital auditorium to mark the anniversary of receiving the first dose of the medicine by Olivia Sanchari Navani.
The event was jointly organized by Bangladesh Society of Medical Genetics and Bangladesh Shishu Hospital and Bangladesh Society of Medical Genetics.
The programme was presided over by Director of Bangladesh Shishu Hospital and Institute Professor Dr. Mohammad Jahangir Alam. The programme was conducted by the National Institute of Neuro Sciences and the head of the pediatric neurology department of the hospital Narayan Saha.
Prof. Dr. Narayan Saha expressed hope that it will be possible to start diagnosis of SMA disease in the country within the next one year.
On March 20, 2022, at the age of nine months, baby Olivia Sanchari received her first dose of oral SMA medication under the supervision of assistant professor of Pediatric Neurology at Bangladesh Shishu Hospital Dr. Shaoli Sarkar.
She said " Navani is undergoing treatment under government. This medicine is provided by Roche Bangladesh Limited completely free of charge."
The social organization 'Cure SMA Bangladesh' has been formed with the aim of creating awareness about SMA disease in the country and ensuring various services to affected patients and their family members. Shahadat Hossain is the president of this organization. Her child Olivia Sanchari Navani has been taking the medicine.
It was informed in the event that Navni has improved unexpectedly as a result of taking medicine.
According to medical history, children with type-1 SMA usually die before 24 months of age. But Navani is two years and two months old. He can move arm and legs. Doctors called it an unexpected improvement.
Spinal muscular atrophy (SMA) is a disorder affecting the motor neurons—nerve cells that control voluntary muscle movement. These cells are located in the spinal cord. Because the muscles cannot respond to signals from the nerves, they atrophy — weaken and shrink — from inactivity.