My journey from leprosy patient to supporting communities and shaping research
Jayashree P. Kunju, co-applicant on the NIHR-funded global health project Transforming the Treatment and Prevention of Leprosy and Buruli ulcers in Low and Middle-Income Countries (LMICs), talks about how her first-hand experience as a leprosy survivor is helping marginalised communities gain awareness and information about how to prevent and treat the disease.
Leprosy is a chronic, progressive bacterial infection that can lead to recurring, disfiguring ulcers. Not everyone with leprosy develops ulcers. But for those who do, their lives can have unfortunate ramifications, leading to depression, sense of hopelessness, and even loss of relationships or jobs.
Overcoming the fear and stigma connected to leprosy
“After receiving treatment for leprosy during the late 1980s, I carried within me the remnant of the disease that I want to term as the ‘phenomena of leprosy’ – post treatment, I lived for almost over a decade with a sense of fear and regret. I had this constant fear of being ‘found out’, and a sense of loss about what my life could have been, had leprosy not happened to me.
However, one day I decided to let the world know that leprosy is indeed a curable disease without long-term physical consequences, provided you can get the right kind of treatment at the right time.
Since ‘coming out’, I’ve been volunteering my time away from my business as a financial consultant, working with various agencies that support people with leprosy.
I’ve visited some of the leprosy referral centres as Vice-Chair of the Lepra Society, a non-governmental organisation that promotes quality health care for people with leprosy, to meet patients and share my experience.
I’m also active on social media, including membership on the Global Leprosy Champions Group, which helps me connect with people who have a shared passion for transforming the lives of people affected by leprosy and helping prevent future generations from suffering.
Through this work, I’ve seen the value of peer-to-peer support and the importance of continuing to push for initiatives to help people with leprosy conquer their fears and live their lives with dignity and purpose.
A unique opportunity to shape global health research working with affected communities
When Professor Richard Lilford from the University of Birmingham invited me to be part of the research proposal to NIHR’s project on Transforming the Treatment and Prevention of Leprosy and Buruli ulcers in Low and Middle Income Countries (LMICs), the opportunity to be involved in research that will help improve outcomes for people with leprosy was too good to pass up.
I recognised immediately that my first-hand experiences of living with leprosy would bring a completely different, but very important, perspective to the project. I’m a key member of the team, and I feel like my contributions are a valuable input, alongside contributions from medical professionals, research academics and other experts. I’m excited by the ambition of the project, which has far-reaching implications. The research studies undertaken in India, Nepal and Nigeria aim to provide evidence of effective interventions, which will rehabilitate individuals and empower them to take care of themselves and of each other in dealing with leprosy and Buruli ulcers.
Being able to contribute to the design of principles, policies and processes for this project has been an enriching journey so far.
For the project, I'm helping put together high level generic guidelines to provide a framework for communities to promote and support self-care to people with leprosy. Many individuals experience various kinds of barriers to self-care, including lack of knowledge about the condition, poverty - many people are daily wage labourers and are unable to take time out of work for treatment - and stigma associated with the condition, which may make people reluctant to wear specialist footwear or clean wounds.
The guidelines will help address these barriers. We’ll then adapt them to the local needs of various countries and contexts. Our links with local communities will be critical to ensure the guidelines are acceptable and relevant to local contexts.
I’m also working on materials disseminating the importance of psychological support and counselling as crucial to the successful treatment of people diagnosed with leprosy.
Community engagement and involvement at the local level
Although I draw on my experiences of living with leprosy at the central level of the project, each of the sites works closely through existing community groups to involve people affected by leprosy and Buruli ulcers in their studies, to ensure our work reflects their needs, and to embed the research in the communities that are the focus of the project.
In Nepal, for example, the team have been working with communities such as the Khokana Leprosarium, situated outside Kathmandu, to work with them to shape the design of the project and engage with the communities early on. This is critical to ensure that our research study designs are acceptable to participants.
Through the embedded community engagement, we will ensure that our research will have real impact and help transform the lives of people affected by leprosy in the future.
Jayashree P. Kunju, co-applicant on the NIHR-funded global health project
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.