Recently, Chief Justice DY Chandrachud shared the challenges faced by his foster daughters, who are battling a rare congenital disorder called nemaline myopathy, a condition that affects muscle proteins, leading to muscle weakness and difficulties with feeding and breathing. It occurs in approximately one in 50,000 births. He even emphasised the emotional burden on families and the diagnostic obstacles, such as the painful biopsies.

He also highlighted the lack of awareness among healthcare providers and the insufficient testing facilities in India. While there is currently no cure, treatments such as physical therapy and respiratory support can help manage symptoms. Studies on gene therapies are ongoing.

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