Understanding Disability First-Hand, Rajni Kant Singh Helps Over 1500 Patients with Leprosy
Despite India being declared "leprosy-free" in 2005, the country still accounts for over half (almost 60 percent) of the world's new leprosy patients.
A report by the National Leprosy Eradication Programme (NLEP) shows that in 2019 Bihar, Maharashtra, Uttar Pradesh, Odisha, Chhattisgarh, Madhya Pradesh, West Bengal, and Jharkhand contributed 76% of the new leprosy cases.
Similarly, Lymphatic Filariasis (LF) is also a major public health problem in India. Despite the existence of the National Filaria Control Programme since 1955, currently, there may be up to 31 million microfilaraemia, 23 million cases of symptomatic filariasis, and about 473 million individuals potentially at risk of infection.
With such a high burden of cases, there is a lack of awareness and challenges about accessibility for diagnosis and treatment. Timely detection of these conditions is critical as delayed detection can cause severe long-term damage in patients.
Rajni Kant Singh, a native of Bihar and a physiotherapist by profession has chosen to help patients. He works hard to eradicate the stigma around the disease, understand its implications, offer medical support, and innovate timely solutions to help patients.
To date, he has created over 200 Self Help Groups (SHGs) for those suffering from LF and Leprosy across various states including Bihar, Jharkhand, and Delhi.
“These patients are ostracized by society owing to skin conditions, physical disabilities and other disabilities stemming from the disease. Even families of the patients do not provide the necessary support. They are isolated and treated poorly. However, these patients require consistent medical treatment, acceptance in the community and a lot of kindness,” says Rajni, adding that the SHGs aim to provide the same.
Over the last two years, he worked through the lockdowns providing food and medical support for over 1500 leprosy patients in Bihar. For this, he was recently awarded the Best Community Volunteer (Including COVID-19 Warrior) at the Plan India Impact Awards, 2022 (PIIA 2022).
Understanding struggles first-hand
Growing up in Bihar, Rajni himself struggled with LF. He noticed the lack of facilities, medical treatments and stigma in society surrounding his condition.
“Such incidents pushed me to work hard for the community and study harder,” says Rajni.
After completing his bachelor's in Science, Rajni began working on a farm along with his father. Farming has been the sole profession in his family for many generations. However, the financial benefits were dwindling and Rajni decided to do other small businesses.
“But in 1995, my grandfather gave his land to a social organization known as LEPRA society. After seeing the work they did, I decided to volunteer there and help out. Within one year, I understood the struggles patients went through and decided to work with them full-time,” says Rajni.
At the same time, he also went on to do his higher education and conducted research in the field of LF and Leprosy. Rajni completed his Master’s in International Public Health (MIPH) from the Liverpool School of Tropical Medicine in the United Kingdom (UK) and also worked with several organizations including the WHO.
By 2006, Rajni was working full-time with the LEPRA society and introduced innovative solutions for patients.
“We started an SHG for the patients affected with LF and Leprosy. These colonies, run by patients themselves, provide counseling, safe living spaces, medical treatment, and care. Each SHG has 11-15 members and if there are more patients in one area, two or three SHGs are set up,” says Rajni.
The patients here are not promised a 100% cure but they are given the necessary treatment to stabilize their condition.
Innovation and COVID-19 support
Patients with Leprosy and LF are prone to develop deformities in their feet. This restricts their movement and some even face amputations. Since they cannot travel for their medical treatments, Rajni launched a Mobile Foot Care unit.
“Patients require comfortable footwear when they are diagnosed with LF or Leprosy. The regular ones and even the doctor-approved footwear are not suitable for them. After conducting research and carrying out pilot studies, I innovated a suitable material for comfortable footwear. However, I was not able to provide this to patients in need. So I decided to take the footwear to them,” says Rajni.
With the support of Pavers (UK), a footwear company, he created the Mobile Foot Care unit. This is a van fitted that travels to remotest parts of Bihar to conduct awareness programs as well as distribute footwear. This mobile van covers 63 leprosy colonies in six months and goes for the second round in the next six months. It is monitored by Samutthan (State forum of disabled persons of leprosy), State Leprosy Officer, and LEPRA society.
Apart from this, Rajni has developed several innovative approaches for disabled people affected by Leprosy, Elephantiasis, and Diabetes. He created combined approaches (LF and Leprosy), for Active Case Findings (ACF). This is a three-step model which includes
The impact of Rajni’s innovations goes beyond just community service. It provides increased mobility for patients, reduced stigma and risk of amputations, healthier lives, and inclusion in society.
During the pandemic, Rajni noticed that apart from requiring comfortable footwear, the patients needed food and medicine. He used the Mobile Footcare Unit van to reach 1500 disabled people in 63 colonies of Bihar. They distributed masks, protective gear, medicines, food packets, and more.
Recently, for all his endeavors, Rajni was awarded the Best Community Volunteer (Including COVID-19 Warrior) at the PIIA 2022. He is grateful for the recognition and also believes it has brought him closer to the community.