For the first time, a diagnostic test for Spinal Muscular Atrophy (SMA), a rare and incurable disease, has been successfully conducted in the country. Previously, this expensive test had to be done in India or other countries.
With the initiative and dedication of the National Institute of Neurosciences and Hospital, along with the support of ‘Cure SMA Bangladesh’ the only organization in the country working on this condition, this significant achievement has been made possible. The National Institute of Laboratory Medicine and Referral Center provided technical assistance for the test.
To mark the release of the test results, a special clinic was held yesterday Tuesday (April 15) at the National Institute of Neurosciences and Hospital in Agargaon. On this day, the results of the SMA tests were handed over to the patients. This marks the first clinical test for this disease in Bangladesh, representing an important addition to the treatment of this rare condition.
The event, named the ‘Neuromuscular Disease Treatment Center’ or ‘SMA Clinic’ provides medical services and consultations for patients with the rare SMA disease.
Professor Dr. Mohammad Gias Uddin Ahmed, Director of the National Institute of Neurosciences and Hospital; Associate Professor Dr. Mohammad Badarul Alam, Joint Director; Professor Dr. Mohammad Shahed Ali Jinnah, Director of the National Institute of Laboratory Medicine and Referral Center; Professor Dr. Narayan Saha, Head of Pediatric Neurology at the National Institute of Neurosciences and Hospital; Assistant Professor Dr. Jubida Parveen from the Pediatric Neurology Department; Mark Heeb, Country Manager of Roche Bangladesh Limited; representatives from Cure SMA Bangladesh; and various specialist doctors from the Children’s Hospital and the National Institute of Laboratory Medicine and Referral Center were present at the event.
This special clinic began its journey in October 2024 for the welfare of SMA-affected patients. The SMA clinic refers to a special arrangement where relevant doctors provide treatment for patients arriving from different parts of the country under one roof. Treating SMA requires a multidisciplinary approach, which is why all necessary medical services have been integrated under this special SMA clinic.
More than 20 patients suffering from genetic disorders, including SMA, received free services at the clinic from various regions of the country. In addition to consultations with doctors, arrangements were made for therapy, sample collection and testing, and advice on necessary devices.
SMA, or Spinal Muscular Atrophy, is a rare and incurable disease caused by the deterioration of motor neurons that control muscle movement. Depending on its severity, SMA is classified into types one through four. Although medication for the disease is available, it is prohibitively expensive for the general public.