Spinal muscular atrophy (SMA) leads to progressive muscle weakness and the patients are severely impacted in their mobility and respiratory function. SMA babies require comprehensive care and management. Once in every two months, these babies must be consulted by a neurologist, pulmonologist, orthopedics, physical medicine specialist, speech therapist and occupational therapist.
To address these pain-points, National Institute of Neuro Sciences & Hospital (NINS) organized a “SMA Clinic: Neuro-muscular Disease Treatment Centre at NINS”, for the patients at the hospital premises on 28 October 2024. Roche Bangladesh Limited was the scientific partner of the event and Cure SMA Bangladesh aided in organizing the clinic.
NINS organized the clinic with a broader goal of establishing a dedicated space for SMA pts within Paediatric Neurology at NINS. This is the first step towards creation of a neuro-muscular disease treatment center (NMDTC) at NINS. The clinic provided an opportunity to have an initial assessment of the SMA patients and also provide them with necessary vaccination.
Caregivers at the clinic shared how such clinics are important for their children. Such clinics give them the opportunity to have suggestions from multidisciplinary doctors to address the multifaceted SMA challenges. For caregivers coming from outside Dhaka, requests were raised to organize such clinics outside Dhaka, so that the burden on the caregivers decreased due to traveling for clinics and check-ups. The patient caregivers also voiced the need of funding for high cost treatment of SMA.
Prof. Dr. Quazi Deen Mohammad, Director, NINS remarked that such clinics will play a critical role in establishing a comprehensive care for SMA patients within Bangladesh. He also shared that treatments are now available in Bangladesh and people from all sectors should come forward to support these patients to get the high cost treatment.
The need for accurate patient data and treatment guidelines was emphasized by Prof. Dr. Md Badrul Alam Mondal, Joint Director, NINS. Prof. Dr. Narayan Chandra Saha, Professor & Department Head, Department of Pediatric Neurology mentioned the collaborative approach that NINS and Cure SMA Bangladesh can take to approach affordable groups to come forward for SMA patients. Roche Bangladesh Limited Country Manager expressed their commitment towards the SMA patients in Bangladesh and mentioned how the clinic and the NMDTC are part of a dream that NINS and Roche saw together to address the challenges of SMA patients.
Alongside patient caregivers and multisectoral doctors, Roche officials and journalists also joined the session.
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