End Leprosy : Pathway is through stopping stigma against affected persons
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Shobha Shukla, Bobby Ramakant-CNS
Leprosy (Hansen’s disease) is a chronic infectious disease caused by a slow growing bacteria called Mycobacterium leprae. But stigma and discrimination against persons affected by leprosy is propelled by us - human beings. This stigma is not only manmade, but is also unjustified, violates human rights and is a result of being blind to the fact that leprosy is curable.
Leprosy is just any other infectious disease, not a ‘curse’ or ‘sin’
Once feared as an incurable neglected tropical disease, leprosy has been treatable and curable with modern medicines since early 1980s. If diagnosed early and treated promptly, it is not disabling too. It is transmitted through close and frequent contact with people who have not been treated. It is NOT spread by casual contact like shaking hands, hugging, sharing meals, or sitting next to someone affected by the disease. Also, the patient stops transmitting the disease within three days after starting treatment with multi-drug therapy.
“Leprosy is just like any other infectious disease and its bacteria can infect anyone susceptible to it. It is not caused by some ‘sin of past life’ or by any 'divine curse'. Then why are we stigmatising and discriminating people affected by leprosy even today?” wonders Maya Ranavare, the first female national President of the Association of Persons Affected by Leprosy (APAL). APAL works in 18 states of India connecting people affected by leprosy living in around 800 leprosy colonies.
Maya was born and raised in a ‘leprosy colony’ in Maharashtra state of India.
Years back, her mother was affected by leprosy. Maya's husband too had leprosy and got cured. “As I was living in a leprosy colony, healthcare workers did their routine screening regularly. When I was about six years old, I was diagnosed quickly after healthcare workers saw white spots. I could access the medicines and get cured, thanks to them,” she said.
Today, she battles leprosy-related stigma and discrimination that continues to cause havoc in the lives of people affected with leprosy even today.
That is why, she and other #endLeprosy leaders together launched a Global Appeal 2025 to end stigma and discrimination against persons affected by leprosy. It was launched from Odisha (one of the high leprosy burden states in India) with endorsement from ministries of health of 56 countries worldwide. The World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa said that 2025 marks 20th anniversary since the Global Appeal was first launched in 2006 in India, home to largest number of people affected by leprosy worldwide. "If we join hands and combine our efforts the vision of a leprosy free world is not an impossible dream- together we can make it possible," said Sasakawa.
Being on the frontlines of fighting stigma
Maya is a remarkable person indeed! Having firsthand witnessed the trials and tribulations (as well as a lot of resilience and some triumphs) of people affected by leprosy since her childhood, she has lived experience of facing and confronting stigma, discrimination and ostracism. She is a survivor and continues to make a difference for the people affected by leprosy globally.
As a woman leader of APAL, Maya has helped highlight and respond to leprosy-related issues with a gender lens. Many girls and women share their concerns which underline the critical need for a gender-sensitive response to address leprosy and other health and development challenges, including stigma, they face- within their homes / families, or at workplaces, or in society in general. Sharing is caring and together unitedly they are trying to find gendered and locally relevant solutions to counter negative and harmful stereotypes related to leprosy and gender.
She shared with CNS (Citizen News Service) that in the past years people who got leprosy disease, when abandoned by their families, were forced to seek shelter in the so called ‘leprosy colonies’. APAL survey shows that there are around 800 leprosy colonies in the country. Odisha state, which is one of the high leprosy burden states in India, has 86 leprosy colonies. Some of the people in leprosy colonies have been living there for the last 60-70 years. Thankfully, in the recent past no new leprosy colony has come up in India.
Maya has studied till 7th standard but has done us all proud by voicing the needs of people affected by leprosy nationwide and advo- cating for change. She has travelled to over 14 countries to unite people affected with leprosy and call for a just change. She told us that she has worked with the government at all levels (district, state and national) and is trying to improve the health and development responses for people affected by leprosy. (To be contd)
Leprosy (Hansen’s disease) is a chronic infectious disease caused by a slow growing bacteria called Mycobacterium leprae. But stigma and discrimination against persons affected by leprosy is propelled by us - human beings. This stigma is not only manmade, but is also unjustified, violates human rights and is a result of being blind to the fact that leprosy is curable.
Leprosy is just any other infectious disease, not a ‘curse’ or ‘sin’
Once feared as an incurable neglected tropical disease, leprosy has been treatable and curable with modern medicines since early 1980s. If diagnosed early and treated promptly, it is not disabling too. It is transmitted through close and frequent contact with people who have not been treated. It is NOT spread by casual contact like shaking hands, hugging, sharing meals, or sitting next to someone affected by the disease. Also, the patient stops transmitting the disease within three days after starting treatment with multi-drug therapy.
“Leprosy is just like any other infectious disease and its bacteria can infect anyone susceptible to it. It is not caused by some ‘sin of past life’ or by any 'divine curse'. Then why are we stigmatising and discriminating people affected by leprosy even today?” wonders Maya Ranavare, the first female national President of the Association of Persons Affected by Leprosy (APAL). APAL works in 18 states of India connecting people affected by leprosy living in around 800 leprosy colonies.
Maya was born and raised in a ‘leprosy colony’ in Maharashtra state of India.
Years back, her mother was affected by leprosy. Maya's husband too had leprosy and got cured. “As I was living in a leprosy colony, healthcare workers did their routine screening regularly. When I was about six years old, I was diagnosed quickly after healthcare workers saw white spots. I could access the medicines and get cured, thanks to them,” she said.
Today, she battles leprosy-related stigma and discrimination that continues to cause havoc in the lives of people affected with leprosy even today.
That is why, she and other #endLeprosy leaders together launched a Global Appeal 2025 to end stigma and discrimination against persons affected by leprosy. It was launched from Odisha (one of the high leprosy burden states in India) with endorsement from ministries of health of 56 countries worldwide. The World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa said that 2025 marks 20th anniversary since the Global Appeal was first launched in 2006 in India, home to largest number of people affected by leprosy worldwide. "If we join hands and combine our efforts the vision of a leprosy free world is not an impossible dream- together we can make it possible," said Sasakawa.
Being on the frontlines of fighting stigma
Maya is a remarkable person indeed! Having firsthand witnessed the trials and tribulations (as well as a lot of resilience and some triumphs) of people affected by leprosy since her childhood, she has lived experience of facing and confronting stigma, discrimination and ostracism. She is a survivor and continues to make a difference for the people affected by leprosy globally.
As a woman leader of APAL, Maya has helped highlight and respond to leprosy-related issues with a gender lens. Many girls and women share their concerns which underline the critical need for a gender-sensitive response to address leprosy and other health and development challenges, including stigma, they face- within their homes / families, or at workplaces, or in society in general. Sharing is caring and together unitedly they are trying to find gendered and locally relevant solutions to counter negative and harmful stereotypes related to leprosy and gender.
She shared with CNS (Citizen News Service) that in the past years people who got leprosy disease, when abandoned by their families, were forced to seek shelter in the so called ‘leprosy colonies’. APAL survey shows that there are around 800 leprosy colonies in the country. Odisha state, which is one of the high leprosy burden states in India, has 86 leprosy colonies. Some of the people in leprosy colonies have been living there for the last 60-70 years. Thankfully, in the recent past no new leprosy colony has come up in India.
Maya has studied till 7th standard but has done us all proud by voicing the needs of people affected by leprosy nationwide and advo- cating for change. She has travelled to over 14 countries to unite people affected with leprosy and call for a just change. She told us that she has worked with the government at all levels (district, state and national) and is trying to improve the health and development responses for people affected by leprosy. (To be contd)