BABY STEPS WITH NEMALINE MYOPATHY

A young parent's excitement knows no bounds to see their toddlers crawl, but what if the toddler's movements are weaker, slower than expected.

- AASHNA REDDY

After a string of doctor visits and tests, the condition is given a name: Nemaline Myopathy. The name might sound familiar to many.

Recently, the former Chief justice of India, DY Chandrachud, talked about his daughters' struggles, living with this disorder. For many families, this rare condition isn't just a diagnosis it marks the beginning of a new journey, with challenges and perspectives.

Understanding the condition

Nemaline Myopathy (NM) is a genetic muscle disorder that affects approximately one in 50,000 people, often showing symptoms from birth. Its name comes from the presence of "nemaline bodies" threadlike structures that appear in muscle cells under a microscope. These threads might be harmless if not for the fact that they interfere with the muscle's ability to function.

A neurosurgeon from the city says, "Nemaline myopathy is a genetic disorder that causes muscle weakness, often starting in the limbs. While there is no cure, treatments like physical therapy and respiratory support can help manage symptoms. Ongoing research into gene therapies may offer hope for better treatments in the future." Parents and caregivers often notice NM early in life: