CJI speaks on foster daughters’ rare disorder. What is nemaline myopathy?

Chief Justice of India DY Chandrachud recently spoke about his foster daughters’ genetic condition, nemaline myopathy. He highlighted the lack of awareness among doctors, caregivers, and parents about the condition.
“Our children have been born with a condition called nemaline myopathy. There is absence of knowledge about myopathy among doctors, caregivers, and certainly, on the part of the parents. The families where the children are born feel nothing is wrong with them,” he was quoted in an Indian Express report.
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Chief Justice Chandrachud shared these experiences during the 9th Annual National Consultation on ‘Protecting the Rights of Children Living with Disability,’ organised by the Supreme Court’s Juvenile Justice Committee, stressing the need for better testing and support systems.
He recalled the painful diagnostic process for his children. “It’s so terribly painful. I still remember the time the test was done for both children. After the older child underwent the test, all that she could say in that sense of pain, suffering from the test — ‘don’t allow my sister to go through the test’,” CJI said.
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• Nemaline myopathy is a muscle disorder that mainly affects skeletal muscles, which are used for movement, United States’ National Library of Medicine defines.
• Individuals with nemaline myopathy experience muscle weakness throughout the body, particularly in the face, neck, trunk, and proximal muscles (those close to the centre of the body).
• The muscle weakness can worsen over time, affecting daily activities.
• Many people with this condition have difficulties with feeding and swallowing, which can lead to further health complications.
• Affected individuals may also experience foot deformities, abnormal curvature of the spine (scoliosis), and joint deformities (contractures).
• Most people with nemaline myopathy can walk, but some children may start walking later than usual. As the condition advances, wheelchair assistance may be necessary.
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• In severe cases, the muscles used for breathing can be affected, leading to life-threatening respiratory difficulties.
• The disorder is classified into six types, ranging from severe congenital to adult-onset, with each type varying in severity and age of onset.
• The severe congenital type is the most life-threatening, with many affected individuals not surviving past early childhood due to respiratory failure.
• The typical congenital type is the most common, characterised by muscle weakness and feeding issues starting in infancy. The adult-onset type is the mildest, with symptoms usually appearing between ages 20 and 50.