A voice which throughout our history, has shaped the very essence of the organisation. Through our work in affected communities, we actively seek to empower and amplify the opinions, views and wishes of people affected by leprosy. It is an intrinsic partnership led by the people who most deeply understand the impact of leprosy on people’s health and well-being.
Lepra is a member of a consortium of international non-governmental organisations, called the International Federation of Anti-Leprosy Associations (ILEP). Spanning more than 60 countries and 1000 project locations worldwide, the group brings together an unparalleled level of expertise and experience.
In 2015, ILEP commissioned an Advisory Panel, a group of seven people with personal experience of leprosy. Meeting twice a year, their input and advice plays an important role in the development of strategy and decision making for the federation.
One such member is Rachna Kumari, who works with the Lepra Society in Bihar, India. Rachna holds an Advanced Diploma in Health Assistance and Nursing and is currently studying for a BA in Sociology. Her own experiences of leprosy drive her to help others with the disease, and her work to help reduce the effects of prejudice is inspirational.
Rachna was married at 18, and had two children with her first husband. She was 24 when she noticed darks spots appeared on her face. Realising she had leprosy, her husband and his family felt justified in forcing her out of her home. Although her parents came to the rescue it was thanks to Lepra that she received proper treatment for leprosy and started to recover. Lepra encouraged Rachna to become a community ambassador to inspire others affected by leprosy, and has sponsored her further education. She married again in 2018 and now lives happily with her husband and children.
Rachna’s life purpose is to help other people with leprosy. She does this every day with patience and compassion, teaching people how to care for themselves through a set of practices. She is also a key member of the State Forum of leprosy affected people in Bihar through which she helps raise awareness in leprosy settlements and advocates for their rights to a life of dignity. This group recently won the highest disability pension in the country for people with leprosy-related disabilities and are now fighting for land rights so that people with leprosy are not unfairly evicted.
In 2014, Rachna was cast in Al Jazeera’s documentary on leprosy called ‘Ancient Enemy in their Lifelines’ series. She speaks on behalf of people affected by leprosy at a number of international events. These have included a meeting in China, organised by the World Health Organisation where she represented people affected by leprosy in India. She was plenary speaker at the NGO NTD Network (NNN) conference in Ethiopia in 2018, key speaker at a leprosy side event during the Human Rights Council in Switzerland in 2019, and a participant in the Global Forum of People’s Organisations on Hansen’s disease in the Philippines in 2019.
“My dream is for India and the world to be free from leprosy. Every time I come across someone affected by leprosy the first thing I tell them is not to feel ashamed of their condition and hold their heads high. There is no need to have fear.”