Optimism giving way to acceptance, leprosy-cured look forward to better future


New Delhi, Leprosy, a disease which is completely curable, still remains a dark mark in the country, with the fully recovered patients still grappling with social stigma. However, a silver lining has appeared in the dark clouds in the form of charitable organisation Sasakawa-India Leprosy Foundation (S-ILF), which has stepped up efforts to eliminate the entrenched stigma attached to leprosy and also make the society free of the disease.

The S-ILF recently organised ‘Youth Against Leprosy’ (YAL), an event to raise awareness about leprosy amongst the younger generation, at India Islamic Cultural Centre in the capital. The programme was the third one, followed by two regional events, held in Madhya Pradesh and Maharashtra recently.

The New Delhi event witnessed participation of 160 students from 30 colleges, who had demonstrated their creative skills and discussed ways to fight against the society typecasting leprosy-affected patients. The organisation also announced that it has joined hands with CII to further it's efforts to eradicate the social stigma faced by persons affected by leprosy and their families, in presence of Health Minister Harsh Vardhan.

On the occasion, Dr Vardhan also released a book, penned by Yohei Sasakawa, chairman of The Nippon Foundation, Japan's largest charitable foundation and Japan's Ambassador for the Human Rights of People Affected by Leprosy. Mr Sasakawa is also the WHO's Goodwill Ambassador for Leprosy Elimination.
Titled 'No Matter Where the Journey Takes Me: One Man's Quest for a Leprosy-Free World,' the book is the uplifting story of a Japanese philanthropist, who has dedicated his life to eradicating leprosy worldwide.

Speaking on the occasion, Dr Vardhan said, “S-ILF is doing great work with these patients and I, myself, today volunteer to work with these patients to better their health and help remove the stigma and discrimination that revolves around the disease and the patients.

'I have already written a letter to Prime Minister Narendra Modi for the abolishment of more than 100 discriminatory laws and I assure the patients and the foundation that these laws will be completely eradicated in the very near future.

'Our government is invested in making the lives of the people better in all ways and the abolishment of these laws is one of the biggest supports we can provide to people affected with leprosy. 'I consider this initiative to be very important and believe that Mr Sasakawa’s book on his journey will serve as a motivation and inspiration to the many youth, who want to work towards the betterment of the society,” Dr Vardhan said.

Vineeta Shanker, Executive Director Sasakawa-India Leprosy Foundation said, “It is very unfortunate that the youth of India has little or no knowledge around the myths associated with leprosy which results in stigma and discrimination against those affected & their families.

Talking to UNI, Dr Shanker, who was an Economic Journalist earlier and became a part of S-ILF by chance, said 'Youth are the best carriers of a social message, future leaders. If we can change the mindset of these youth, then we can change the mindset of this country.

Talking about her entry into this field, she said, 'I wanted a change from my world of academics. I had a chance meeting with Dr Sasikawa, where I realised that this is what I wanted to do. That's how the S-ILF was born. 'The very little knowledge that they gain is often vague and endorses the stigma against the disease. At the foundation, we are committed to sensitise the youth, so that they can spread the word and contribute towards the elimination of stigma leading to a more inclusive and empathetic society.

"We hope to reach out maximum number of Youth every year through Sasakawa-India Leprosy Foundation’s new initiative The Youth Festival at both regional and national level. 'As of now, we at S-ILF have sensitised 12000 plus students from colleges and schools and reached out to more than 17 lakh youth through our Awareness Sessions & Youth Festivals", Dr Shanker added.

Speaking at the event, Tarun Das, Chairman, Sasakawa- India Leprosy Foundation said, “Integration of youth from the leprosy colonies with youth from outside the colonies is an essential part of S-ILF activities to eradicate stigma and discrimination. The Youth Festivals have served as effective means in achieving this objective.

He said with the help of Sasakawa, 2,230 people affected by leprosy and their families have found livelihood of their preference. The top states which have benefited from this intervention are MP and Bihar, where the numbers of assisted beneficiaries are 340 and 270, respectively. Also, as part of enabling lives of dignity and social acceptance, S-ILF has successfully implemented and rolled-out its education programme for the children of persons affected by leprosy. This has so far helped benefit 1,5070 plus children of across 15 states.

As far as job preferences are concerned; retail, livestock, and farming are the top three professions of choice of persons cured by leprosy in India. In the states of Andhra Pradesh and Telangana, 37.5 per cent of the leprosy cured patients took farming as their most preferred occupation as they had access to land donated years ago by some trust. In Chhattisgarh, 26 per cent preferred livestock as their most preferred profession. S-ILF has also imparted training to over 3000 students in 20 colleges in Madhya Pradesh, Bihar, Maharashtra and other states, he added.