Deep-rooted discrimination against persons affected by leprosy or Hansen’s disease has marginalized individuals and communities. As social pariahs, opportunities to pursue their dreams are limited because, at best, they live at the periphery of society and, more often than not, are ostracized.
When Yohei Sasakawa visited a remote village in Cameroon, he found 23 people living there.
On a visit to Indonesia’s Papua Province, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa had dinner with a man forced from his village and living alone because he was affected by leprosy.
Seidu Ishaiku lives in the hope that his children will succeed. He and his family live with about 300 other residents in the Alheri leprosy colony outside Nigeria's Federal Capital Territory Abuja.
For the WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, ensuring affected peoples’ human rights is fundamental to the campaign to eradicate the disease.
Yohei Sasakawa said the youth have the power to change the world, and their participation in removing the stigma and myths about leprosy is crucial to the campaign to end the disease.
The human rights of people affected by leprosy are central to Yohei Sasakawa’s concept of a leprosy-free world.
As 2021 nears its end, public health systems worldwide remain severely strained by COVID 19, which is showing no sign of ending. But even as countries battle to control the deadly pandemic, they must also maintain the progress made against other diseases, including leprosy, global leprosy experts and advocates have urged.
A new dawn has come, and it was through the work of Yohei Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination, that those affected by leprosy now had a voice to speak for themselves.
A visit to a leprosy facility in Korea with his father, Ryoichi Sasakawa, spurred Yohei Sasakawa to dedicate his life to eliminating both the disease and discrimination of those affected.
Lilibeth Evarestus of Lagos, Nigeria doesn’t like the concept of handouts — she is against the idea of thinking of leprosy-affected people as weak.
Yet, for several months now, Evarastus – a human rights lawyer and founder of community welfare organisation, Purple Hope Foundation – has been spending a lot of time on the road, distributing food items and hygiene products among the leprosy-affected people in her community.
Rachna Kumari of Munger in Eastern India’s Bihar state is not yet 30. But she's already been married at 18, abandoned by her husband after she was diagnosed with leprosy and become an award-winning advocate of the disease. She has traversed a long road. And this week she undertook another step in her journey to fly to Manila, Philippines, as a delegate at the 20th International Leprosy Congress (ILC).
Forty years ago, Yohei Sasakawa saw his father moved to tears after meeting and witnessing the suffering of people affected by leprosy – also known as Hansen’s disease. Not only did the patients have a physical illness, but they also suffered from social exclusion and discrimination. It made the young Sasakawa vow to work for the elimination of leprosy from the world – just as his father had been doing.
Stronger government action to fight stigma and discrimination, more government funding for health and non-health support programmes, and a larger role for people’s organisations in developing policy towards Hansen's disease treatment and eradication are still needed for eliminating the disease.
The Global Forum of People’s Organisations on Hansen’s Disease, which was attended by members of people’s organisations from 23 different countries, wrapped up in Manila, Philippines, today Sept. 10 after four days of discussion and deliberation.
The main outcome was a set of recommendations, which included participants stating that those affected by the disease should have more inclusive roles in the global campaign against leprosy.
Octogenarian Yohei Sasakawa has travelled to more than 90 countries across the globe; from areas of conflict, to the jungles of Brazil, shaking hands, hugging and washing the feet of Hansen’s disease-affected people. His message is simple: Stop stigmatisation and eliminate the disease.
Increasing awareness of the continuing existence of Hansen’s Disease (leprosy) is critical to sustaining effective public health efforts against the disease, eliminating the social stigma associated with it, and halting its transmission.
Professor Ai Kurosaka remembers the day she first interacted with a person affected by Hansen’s disease. It was 2003 and Kurosaka, then a graduate student of sociology at the Saitama University in Japan, had been assigned to interview ex-patients and their family members to document what kind of discrimination they faced. It was a very difficult task because nobody wanted to speak or identify themselves.
Organisations supporting people affected by Hansen’s disease (leprosy) have social rather than capitalist aims, but they need to take a business-minded approach to their work if they wish to be sustainable, experts at a global conference in Manila, Philippines said.
Organisations of people affected by Hansen’s Disease or leprosy agree that a global network of volunteer groups is key to eradicating the disease, but concrete steps need to be taken to move the idea from an often-discussed concept to a reality.
Being part of a platform where leprosy-affected people from all over the world can freely interact, exchange and share opinions, ideas, experiences and strategies was always something Tasfaye Tadesse dreamt of.