Raising Awareness On Spinal Muscular Atrophy: The Silent Battle Every Indian Should Know

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Shining a Light on Spinal Muscular Atrophy: Understanding the Silent Struggle and the Path to Care

Raising Awareness On Spinal Muscular Atrophy: The Silent Battle Every Indian Should Know
Shining a Light on Spinal Muscular Atrophy
VerifiedVERIFIED By: Dr Sanjukta De, Clinical Director and Senior Paediatrician Department of Paediatrics, Peerless Hospital Kolkata



Written by Tavishi Dogra |Updated : January 19, 2025 4:54 PM IST

In our pursuit to advance healthcare, some rare diseases still go unnoticed, with most people unaware of their seriousness. One such condition is Spinal Muscular Atrophy (SMA), a genetic disorder affecting infants and young children, impacting their movement and muscle function. SMA is a genetic disorder of movement (wasting) because the muscles aren’t receiving proper signals to function. It is found in an estimated 1 in 10,000 live-born babies, with a carrier frequency of 1 in 38 individuals in India. SMA is often caused by a deficiency in a protein called SMN (Survival Motor Neuron), essential for motor neuron health.

Symptoms Of Spinal Muscular Atrophy

Symptoms of SMA can vary widely depending on the specific type and the age of onset.

  • The most prevalent form of SMA, Type 1, typically has symptoms within the first six months of life. Infants affected by this condition often exhibit significant muscle weakness, particularly in their neck and trunk muscles. This weakness hampers their ability to sit up unsupported or maintain head control, leading to challenges in achieving typical developmental milestones for their age.
  • Moreover, these infants may experience difficulties with swallowing and breathing, increasing their risk of respiratory complications. This can result in episodes of aspiration, where food or liquid enters the airway, further complicating feeding and increasing the likelihood of pneumonia. As the disease progresses, muscle weakness can lead to reduced mobility and overall muscle atrophy, significantly impacting the child’s quality of life. Address these challenges and improve outcomes for affected infants.

Multidisciplinary Approach: The Key To Managing SMA

SMA is a complex disorder that requires a multidisciplinary approach to ensure comprehensive care.

  • Each patient’s needs may vary depending on the type and severity of the disease, so a collaborative effort from various specialists is crucial for effective management. The multidisciplinary team often includes neurologists, who focus on the neurological aspects of the condition and monitor disease progression; respiratory therapists, who assess and manage respiratory function, ensuring patients maintain adequate ventilation; and physical and occupational therapists, who develop exercise programs and assistive strategies to enhance mobility and daily living skills.
  • Spinal Muscular Atrophy (SMA) is a significant, life-changing condition, yet advancements in treatment and early detection are shifting the landscape. However, SMA is a distant concern for many, so staying informed and proactive is essential. Understanding the symptoms and supporting a multidisciplinary care approach can ensure a better future for those affected by SMA.

This can include access to support groups where patients and families can share experiences, resources, and counsel from professionals experienced in chronic illness.



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