Born deaf and mute in Kashmir’s ‘silent village’: ‘This disease has bruised every soul here’

This included a team from Indian Council of Medical Research (ICMR) in 2014, who screened 2,473 villagers. They found 33 children under the age of 10 were suffering from hearing impairments, while 39 adults were identified as deaf and dumb. In the years since, 11 more cases have been identified – taking the total to 83.

Health experts have identified Otoferlin as the gene responsible for the high number of hearing-impaired cases.

Dr Sunil Kumar Raina, who led the team of ICMR researchers to the village, says it has the world’s highest prevalence of non-syndromic deaf-mutism. “Genetic testing showed autosomal recessive mutation among the people, causing a high prevalence of cases linked to consanguineous marriages,” he adds.

But instead of spreading solely from Mr Baksh, as the villagers had suspected, genetic mapping showed there is more than one lineage responsible, Mr Raina says. 

In other words, Dhadkaie’s reputation as a “silent village” may have actually amplified prevalence.

“It seems the disease got social acceptance and people with similar genetic disorders migrated from outside into the village and settled down there, resulting in a rise in cases,” Dr Raina says.

To change the village’s future, authorities are now encouraging residents in this remote community to break their isolation and search for partners further afield.

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