When leprosy became a calling

Oh, I will not work here in Chandigarh. They want me to work on leprosy,’ I vehemently told my husband. ‘I have a couple of offers from Delhi also, let us go there!’

We had arrived in Chandigarh in January four decades back from Srinagar after two aborted attempts due to heavy snowfall. I had a six-month-old infant to handle and working for leprosy was intimidating. So off we went to Delhi. But as luck would have it, the persons who had called me were away attending a conference. I was disheartened.

Back in Chandigarh, I joined as a researcher after a gruelling interview. Even though less contagious than most other infections, fear of contracting leprosy was rampant. But I soon mingled and empathised with leprosy patients. Even though leprosy is curable, the stigma prevented patients from seeking help and many of them got deformed limbs due to lack of pain sensation, causing constant injuries and infections.

It was around mid-eighties, when Dr U Ko Ko, Regional Director, WHO SEARO, visited us and appreciated our work. A few years later, I worked with the National Hansen’s Disease Centre at Carville, which was the first and the only leprosarium in the US, catering to leprosy work.

I lived among leprosy patients, who became my friends, and together we would have dinner each evening in a common hall. Many of them had known me by name even before I met them, due to my several contributions to a medical journal published by them. ‘Why do you call it The Star?’ I asked the editor inquisitively one day. ‘It gives us hope like a star shining on us,’ he said smilingly, while working on the printing machine with his deformed hands.

In the US, I saw several armadillos crushed on the streets. These wild animals were believed to be a source of leprosy infection in humans. In fact, armadillos were imported for leprosy research by the Jalma institute in Agra, but they could not survive the tropical climate of India.

While in Carville, I was gifted Stanley Stein’s Alone No Longer, an autobiography of his incarcerated life in the Carville leprosarium along with several others afflicted with the disease. Even though many still believe the disease to be extinct, in the US alone, 159 new cases were reported in 2020, though much less than that in India.

Working for a decade on leprosy drew me to the patients. My family and I became frequent visitors to the leprosy colony in Chandigarh. Despite their sufferings, these people live peacefully with one another. This year, Anti-Leprosy Day and World Leprosy Day coincide and will be celebrated with the theme, ‘United for Dignity’, on the death anniversary of Mahatma Gandhi, who was compassionate towards leprosy patients. It is heartening that the National Leprosy Eradication Programme of India is working for a leprosy-free India and we hope it soon sails through.