International Leprosy Association -
History of Leprosy

  • International Leprosy Association -
    History of Leprosy

    Mr. Positive

    Originally published in the WHO Goodwill Ambassador’s Newsletter for the Elimination of Leprosy, Issue No. 59 (December 2012). The information was correct and current at the time of publication.


    Once a depressed young boy, Nilkanth Koli now radiates self-assurance.

    Standing tall: Nilkanth Koli addresses youth camp participants at Shantivan.

    Standing tall: Nilkanth Koli addresses youth camp participants at Shantivan.

    Nilkanth Koli works as youth camp coordinator at Shantivan, a 120-acre community established by rural service organization Kustharog Niwaran Samiti in India’s Maharashtra state. Initially founded to treat and rehabilitate persons with leprosy, Shantivan has broadened its scope to include rural development.

    Koli was just eight when his parents were summoned to his school to be told their son had leprosy, which had been diagnosed following a routine examination by a visiting leprosy technician. Within a few months he was developing deformities to his hands and feet, and had begun to suffer from foot ulcers. His family could not care for him properly, so his father decided he would be better off at Shantivan.

    “I was very upset because I had to leave my family. At first I couldn’t stop thinking about them,” Koli recalls of that time. “I felt so lonely.”

    Shantivan’s general secretary arranged for him to attend a nearby school, but Koli stopped going after a few days because he felt depressed and self-conscious about his hands and feet. Shantivan was a very friendly place, however, and being the only child there at the time, he found himself showered with affection.


    Several years before Koli arrived, Shantivan had begun organizing student youth camps. Young people from Mumbai and surrounding areas would stay for three days, learning about leprosy, doing voluntary work and spending time with Shantivan’s residents.

    Koli found himself being asked many questions. “It was a great opportunity to share my feelings with young people from the community,” he recalls. “I gradually developed an interest in these camps and started working as a program assistant. I could feel my self-confidence returning.”

    If the camps had a transforming effect on Koli, they also had a similar effect on the visitors. He recounts the story of one of the first batches of students returning unannounced and saying, “Today is Raksha Bandhan and we want to tie sacred threads on your wrists.”* It was a joyous moment. “Never before in the experience of people affected by leprosy at Shantivan had their brothers and sisters from the community remembered them in this way,” Koli says.

    I started working as a program assistant. I could feel my self-confidence returning.

    Another group of students was very shy and reluctant to take part in any of the cultural activities that had been organized for them, in spite of Koli’s best efforts to involve them. Some months later, he received an invitation from their school principal. “To my surprise, I found myself watching the same group of students performing in a drama and winning a prize,” he says. “The school attributed this change in the students to the encouragement they had received at Shantivan.”

    To date, some 200,000 students have passed through Shantivan. They go on to spread awareness of leprosy, raise funds for Shantivan’s activities and come back to celebrate personal milestones. “It’s a social movement,” Koli says. “It makes me very proud that we have conveyed the message that ‘leprosy is curable’ to so many students and have turned them into ambassadors for Shantivan.”


    * A festival that celebrates the relationship between brothers and sisters.