October 18, 2018
Rachna Kumari spoke to ILEP’s Rosa Argent at the NNN 2018 conference in Addis Ababa at the end of September. Rachna is a Community Mobiliser in a LEPRA Society’s leprosy referral centre in Munger, Bihar State of India, and is a member of the ILEP panel of men and women affected by leprosy.
“My name is Rachna Kumari and I am affected with leprosy. I was 24 when I became aware that I had leprosy. My journey to recovery was a long one filled with wrong diagnosis…”
With these words, Rachna Kumari started her address to the 400 delegates attending the opening session of the Neglected Topical Diseases NGO Network (NNN) in Addis Ababa, Ethiopia.
She delivered a powerful personal testimony that made the case for the genuine participation of persons affected by neglected tropical diseases. Many of the obstacles she faced – including economic hardship and social stigma – are common barriers that exclude many people living with NTDs, including leprosy, in poor and marginalized communities around the world from participating equally in society.
Calling for “governments, NGOs and the WHO to work for policy changes that involve us persons affected by leprosy and other NTDs”, she tells me later, was a proud moment in her life. “I was sharing my voice on this international platform. I was representing all people affected.”
Rachna says she reflects often on how her life has changed. She was working different casual jobs in factories in New Delhi and “not looking after myself well” when she first noticed the symptoms of leprosy. She was struggling to do up buttons on clothes or brush her hair due to numbness in her fingers. Eventually the pain in her hands, arms and feet, coupled with a terrible fever, drove her to seek medical help. A doctor failed to detect leprosy and sent her away with drugs that did not work. Days later, and in severe pain, she sought help at the All India Institute of Medical Sciences, where she finally received her diagnosis. After receiving treatment and being discharged, she returned home to Bihar to start her 12 month course of Multi Drug Therapy.
At this point in her life, her son was 3.5 years old and her daughter was just 2 years old. Rachna describes the personal pain she experienced dealing not only with the knowledge of “this bacteria inside me” but the sudden death of her supportive husband too. “I struggled with this disease and I struggled in all aspects of my life. My mind had changed and my husband had gone.”
Forced to raise her children alone, she worried about passing leprosy onto them. Despite taking MDT, for four long years she was careful not to eat or sleep with her son or daughter.
“Due to personal tragedies also occurring (at the same time as) leprosy I suffered the worst moments of my life. Hence I feel early detection is very important. It was thanks to the NGO Lepra that I received proper treatment and began to recover. This visit changed my life completely,” says Rachna.
Now working for Lepra, Rachna’s day job at the Munger referral centre allows her to help other women with leprosy access treatment and care, as well providing vital social services. She works with the community to teach self-care techniques and counselling. Focus group discussions are run for men and women, both collectively and separately, and Rachna draws on her own past to help others open up about their own concerns or difficulties, which can be physical or psychological.
“Since I have experienced the pain and effects of being affected by leprosy, like difficulties in getting correct treatment, facing stigma, it is easier to understand the thinking and emotional disturbances of these people,” she says.
As a member of the ILEP panel of men and women affected by leprosy, she also spends a considerable amount of time travelling internationally to meetings to “raise awareness and advocate for the rights of the leprosy affected to lead a life of dignity”. She remarried in January 2018 and together the couple have 4 children (3 boys and one girl). Fortunately, her new husband is very supportive and helps look after the children while she is away.
“It seems like I have three lives,” she tells me. “My first life with my husband was very good. The second stage was very bad, and I suffered very much. But now I am in the third stage, my real new life.”