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.
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.
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.
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.
Professor Takahiro Nanri is the executive director of the Sasakawa Health Foundation, co-organiser of the Global Forum of People’s Organisations on Hansen’s Disease, which will take place from Sept. 7 to 10 in the Philippines.
Kumaribai Jamkatan, 51, has been fighting for women’s land rights since 1987.
Though the constitution of India grants equal rights to men and women, women first started to stake their claim for formal ownership of land only after 2005–the year the government accorded legal rights to daughters to be co-owners of family-owned land.
Jam Bai, an Indigenous farmer from Korchi village in western India, is a woman in hurry. After two months of waiting, the rains have finally come and the rice saplings for her paddy fields must be sown this week while the land is still soft.
During his 22-year career in the health sector, Marcus Samo has seen the Federated States of Micronesia (FSM) suffer from an increased burden of disease while at the same time the resources to address them have either remained the same or decreased.
It’s a good day for Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia. He’s just been told that he is cured of leprosy.
In Jack Niedenthal’s office in Majuro, there is an ominous reminder of the dark history of the Marshall Islands—once the site for dozens of nuclear tests conducted by the United States between 1946 and 1962. But it also provides a strong message about the future of island nation.
It’s a Friday morning and Dr. Ken Jetton, the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands, is seeing a patient recently cured of the disease.
Elizabeth Keller is one of the most senior health officials in the Federated States of Micronesia (FSM).
She is the current acting chief of Public Health and also the head of the leprosy programme in the island nation’s capital of Pohnpei.
Mayleen Ekiek has been working with the Department of Health in the Federated States of Micronesia (FSM) for 12 years now. She is the head of the National Leprosy Programme in the Pacific island nation, which still remains one of three, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy.
Meretha Pierson has been a nurse for the past seven years, working in the government-run leprosy clinic in Majuro, the capital of the Marshall Islands. Her patients come in all ages, from different economic backgrounds and different professions. But, aside from their diagnosis, they all have something else in common: everyone wants to keep their illness a secret.
His multiple awards and degrees aside, Dr. Arturo Cunanan is known as a people’s doctor; one who has profound belief in the human rights of every person affected by Hansen’s disease, commonly known as leprosy.
Eluminada Roca has lived all her life next to the Leyte Sab-a Basin peatlands. The grandmother from of San Isidro village in Philippines’ Leyte island grew up looking at the green hills that feed water to the peatland, she harvested tikog—a peatland grass to weave mats—and ate the delicious fish that was once in abundant in the waters.
But today, the land is losing its water, the grass is disappearing and the fish stock has drastically decreased.
As the Executive Director of Sasakawa Memorial Health Foundation (SMHF), Takahiro Nanri has been working on the issue of leprosy since 2014. Over the past few years, he has traveled across the world visiting the large number of leprosy projects that SMHF has been supporting and meeting dozens of organisations led by leprosy-affected people.
Discrimination against women who are affected by leprosy or Hansen's Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
Takahiro Nanri is the Executive Director of Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for almost five decades. Since 2014, Nanri has been leading the foundation’s leprosy projects across the world and has deep insights into the challenges faced by the people affected by leprosy as well as the organisations that work with them.