For millions of people worldwide, mental illness can be a lifelong consequence of experiencing the stigma and discrimination of leprosy. Those diagnosed with leprosy often suffer exclusion and isolation such as being thrown out of their families, losing their job or being unwelcome in public places. Not surprisingly such discrimination can result in a high burden of emotional distress, loneliness, depression and may even lead to suicide.
Mohan’s story
Mohan Kanda from Andhra Pradesh, India, suffered from polio when he was aged two and he grew up with impairments in his leg. By the age of 16 both his parents had died, and he was left to fend for himself. Then as a young man aged 21, he was diagnosed with leprosy. It was another three years later before he was cured. By then his hands had developed irreparable damage caused by leprosy. Loneliness and stigma from leprosy drove him to try and end his life on many desperate occasions.
Telling his story at the recent Neglected Tropical Disease NGO Network meeting in Addis Ababa, Mohan said: ‘I felt the need to hide myself away when my leprosy started to show, and people started to shun me. Even my beloved sister told her four children to stay away from me. No one understood how terrible this was. I tried to kill myself many times. Once I tried to catch a snake, so it would bite me, but it also ran away. Even this snake reminded me of how people ran away from me.’
Mohan concluded: ‘Leprosy has the ultimate power. It destroys relationships. I thought I would be discriminated against for life.’
Mohan Kanda as he is today with TLMEW Senior Programmes Manager, Gareth Shrubsole, in Addis Ababa. Copyright: The Leprosy Mission.
Thankfully, in 2016, Mohan was referred to The Leprosy Mission (TLM) where he attended a Vocational Training Centre (VTC) in Tamil Nadu. Since then he has been studying computing and learning English and Tamil.
Mohan said: ‘I can’t forget that day; it was a turning point. At first, I was afraid of stigma and that I wouldn’t fit in, but I started to feel more comfortable when I was offered help and treated as a normal human being.
‘At first I wasn’t confident because I didn’t know how to use a computer keyboard and I typed very slowly.
‘Because of my clawed hands one finger would hit two keys which made me frustrated and afraid. I thought that the VTC was my last chance to turn my life around, but the instructors helped me to develop my own style of typing.
The stigma experienced by a person diagnosed with leprosy can have a devastating effect on their life and a profound effect on their mental health.
‘The Leprosy Mission made me understand that I was a valuable person. I was not useless and worthless. Ideas of suicide had always been with me, but since I’ve come to the VTC, I forgotten them. Now I’m confident, I can live, I can earn a living, I can do something worthwhile.
‘I want to be a role model for other people with leprosy and I will fight against leprosy stigma on their behalf until my last breath.’
At the recent NTD NGO Network meeting in Addis Ababa, Ethiopia, Mohan was invited to tell his story. Convenor of that session, renowned leprosy expert, Dr Wim Van Brakel from NLR said: ‘The stigma and discrimination experienced by a person diagnosed with leprosy can have a devastating effect on their life and a profound effect on their mental health.
‘The impact and consequences of leprosy stigma are for life if no help is available. They can affect the whole family, and everyone associated with the leprosy-affected person.”
Leprosy is a 21st century disease. It was revealed that 210,6711 people were newly detected with leprosy last year, over 12,000 of whom have visible impairments.
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