Guidance and Measures’ published by Hasan Mahmud

Spinal Muscular Atrophy, or SMA, is a rare disease. Treatment options for SMA in Bangladesh remain limited like many countries around the world. For the first time in the country, a non-physician’s guidebook offering advice and recommended actions for this rare disease has been published. The book is authored by journalist and social worker Hasan Mahmud.

The book unveiling ceremony took place on Sunday morning in the hallroom of the Accounting Department at the University of Dhaka (DU).

At the event, Professor Maksudur Rahman, Chairman of the Accounting Department at Dhaka University, Professor Dr. Dewan Mahbub Hossain, Professor Amiruz Salat, Professor Dr. Md. Saiful Alam, Associate Professor Al Amin, Hasan Mahmud, President of ‘Cure SMA Bangladesh,’ and Omar Faruq, General Secretary, among others, were present.

‘Cure SMA Bangladesh’ is the only organization in the country working for the welfare of patients affected by SMA. The author of the book also serves as the organization's president.

Regarding the book, author Hasan Mahmud said, the book was written with an emphasis on raising awareness about the disease and for the benefit of patients. It is designed as a guidebook for patient counseling and is part of patient advocacy efforts. Since I am not a medical doctor, the book’s content relies on information from journals, research papers, and presentations from various international seminars. Medical terms used in the book have been sourced from different publications or taken from advice and columns by medical professionals. The greatest contribution, however, comes from the dedicated members of Cure SMA Bangladesh.

He further stated that after writing the book, it was reviewed for factual accuracy and precision by three expert doctors. These three distinguished physicians are Professor Dr. ARM Lutful Kabir, the country’s renowned pediatrician and pulmonologist; media personality and physician Abdun Noor Tushar; and Dr. Zobaida Parvin, Assistant Professor in the Pediatric Neurology Department at the National Institute of Neurosciences and Hospital. He hopes that those affected by SMA will find a useful guideline in this book, while others will gain an understanding of this rare disease.

The author of the book, Hasan Mahamud, is a professional journalist currently serving as the chief reporter for Risingbd.com. In addition, he is the president of Cure SMA Bangladesh and the ‘International Relations Reporters Forum’ (IRF), an organization of professional journalists specializing in international relations. For his exceptional contributions to journalism, he has received the ‘Sher-e-Bangla Gold Medal.’ He has also been awarded the ‘Media Fellowship 2024’ from the National Consumer Rights Protection Directorate and ASBMEIB. In 2021, he received a special recognition from the Bangladesh Writers Guild for original contributions to novels, and in 2018, he was honored by the Dhaka Reporters Unity for his writing. For his social service, he was awarded the ‘GivingNow Award 2024.’ He has published six books.

SMA is a genetic disorder caused by a defect in the SMN1 gene. The absence of this gene means the body cannot produce the essential protein needed, which damages nerve cells (neurons). SMA is a life-threatening condition. This progressive disease gradually weakens muscle strength. Although patients may initially be able to walk or stand, they eventually lose this ability. Moreover, due to muscle weakness, movement in the arms and legs decreases, leading to poor blood circulation in the muscles, which can cause the limbs to become dry. However, medication and therapy can help maintain muscle strength to a significant extent. Therefore, regular physiotherapy is essential to keep the muscles active. These treatments, however, are often very costly. If a child is affected by type 1 SMA, they may pass away within just 20 months. In Bangladesh, treatment and research on SMA remain limited.