Six months ago, a colleague referred a brother and sister from a nearby district. They regularly helped as exam cases at his previous hospital, as they had Spinal Muscular Atrophy(SMA). Their parents were told that the condition had no cure and that the children would die in their teens.
It has been six months since they started visiting the neuromuscular team at BGS Global. When they first visited me, I confirmed the diagnosis after evaluation, and informed them that the children had SMA type III. SMA destroys the part of the spinal cord (anterior horn cells) that controls our ability to walk and do things. It is a genetic condition with no definitive cure currently.
Like most neuromuscular conditions that often have no definitive cure, it is possible to improve and maintain good quality of life and life span by following international guidelines on standards of care. This also sometimes involves small doses of Salbutamol, which is commonly used in the treatment of asthma. This is done with strict monitoring for side effects and extensive physiotherapy assessment scores, which help us with dosing as well as identifying problems early on and intervening.
With these children it has been a rewarding experience for all of us, including our neuromuscular physiotherapy team. Since they have been with us, they have started doing household chores including getting water from the well, where previously the eldest daughter was struggling to get up from a chair and did not walk outside the house. Her brother who is younger told us excitedly this time “I walk for 10 minutes every day regularly!”
The team at GIN which put these children back on their feet included Dr Suvarna S. Ghuge and Dr Kalyan Dehingia