Despite higher detection rates, multiple sclerosis awareness remains low in India

Mumbai: When Sheela Chitnis started the Multiple Sclerosis Society of India (MSSI) in 1985, multiple sclerosis (MS) was barely a whisper in India’s medical conversation. Four decades later, she said, the silence has not lifted nearly enough, cases are rising, but awareness remains frozen in time.

“It’s the same condition as 15-20 years back,” she said, ahead of World Multiple Sclerosis Day on May 30.

MS is a chronic disease of the central nervous system affecting its functioning, causing disability in young people. It often begins deceptively, a sudden blurring of vision, a stumble, a coordination problem. Patients are referred to neurologists years after symptoms first appear. While diagnosis has become easier these days with MRI, getting there remains a journey fraught with social and financial hurdles.

Consider 45-year-old Ramesh (name changed), who is registered with MSSI. His first symptoms appeared when he was 26, but it took another seven years for the right diagnosis. As a result, he progressed into secondary progressive MS, characterised by worsening of neurological function and disability.

Naina, an architect, has been a tad luckier. After graduating in 2015, she noticed blurry vision and a small black spot in her vision. She had three consultations with ophthalmologists, but it was a year before she was advised to undergo an MRI that revealed her MS diagnosis. “Because treatment and diagnosis were done early, it didn’t affect me much,” she told TOI, adding that the spot gradually vanished. Before her diagnosis, she had never heard of MS.

Neurologist Dr Kaustubh Mahajan from S L Raheja Hospital, Mahim, however, said there has been a steady increase in reported instances of MS in India. “This is partly because of the greater availability of MRI scans and increased awareness of neurological problems. Plus, other causes related to urban living and evolving immune systems.”

The moment a diagnosis is confirmed, life changes. MS reshapes daily routines, patients and families adapt in ways they never anticipated. MSSI hence provides mobility aids and diapers free of cost to patients. The stigma is perhaps the sharpest barrier. Women stay silent about their diagnosis, worried it could derail marriage prospects.

MS is not contagious, not hereditary, it is not a mental illness, and rarely fatal, and crucially it is now treatable and manageable. Injections administered every six months, newer medicines, and rehabilitation methods are keeping patients hopeful. MSSI has recently launched programmes to help MS patients find employment.