World Leprosy Day 2019: Time to end the stigma and discrimination of leprosy!

ILEP President’s Statement by Jan van Berkel

This World Leprosy Day, Sunday 27 January, provides an important opportunity to draw attention to the often-neglected aspects of leprosy – the negative social implications many persons affected by the disease experience on a daily basis.

Ending the stigma, discrimination and prejudice of leprosyis the theme of World Leprosy Day 2019.

Each year more than 200,000 women, men and children are diagnosed with leprosy, according to World Health Organisation figures. Approximately 8 out of 10 cases are from India, Brazil or Indonesia.

The majority of people diagnosed with leprosy are known to experience negative social attitudes. These can have devastating consequences on the lives of persons affected by the disease and their family members, and impact upon schooling, work, and marriage. A leprosy diagnosis also affects many people’s mental health and wellbeing.

Up to 50% of people affected by leprosy will face mental health issues, such as depression or anxiety. There is also an increased risk of suicide among people living with the disease.

Stigma towards people affected by leprosy is particularly damaging to women and girls, who may already be more socially vulnerable because of their gender. Girls’ marriage prospects are often dramatically reduced if they are diagnosed with leprosy. Women are more likely to be divorced by their husbands because of the disease and will have a lower chance of remarriage.

ILEP research conducted in 2018 revealed that 157 laws discriminating against people affected by leprosy still exist in 29 countries. States must abolish these laws and instead promote legislation that ensures human rights and a life of dignity for people affected by leprosy.

Other ways we can end stigma and discrimination is through increasing social inclusion, strengthening the community participation of persons affected, improving their access to services (economic and social), and supporting community-based rehabilitation.

On this World Leprosy Day, ILEP calls for States to use the UN Convention on the Rights of Persons with Disabilities (CRPD) as a framework to eliminate the stigma and discrimination used against people with leprosy-related disabilities. States must also implement the UN Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, with a focus on more vulnerable groups, such as women and children.

By working together, we can achieve zero discrimination for people affected by leprosy and be one step closer to a world with zero leprosy.

ILEP President, Jan van Berkel

Mohan’s story: overcoming stigma and despair, and helping others to do the same

Born in 1982, Mohan was afflicted with lameness from polio at the age of 2. After his diagnosis of leprosy, however, what slowed him down were not his physical difficulties, but the discrimination he faced from family, relatives, friends, and society. Worried about his future, he hid his disease from his loved ones for a long time. After a time of struggle and difficulty, Mohan has turned his life around and now volunteers with the CREATE Project, run by the Leprosy Mission Trust of India. Today, Mohan travels as an advocate for zero discrimination and dedicates his life to helping improve the mental wellbeing of persons affected by leprosy.

Here is Mohan’s story, in his own words:

“I was affected by leprosy when I was 21… At that particular time no one understood my pain and consoled me. So I decided to hide my disease from my family, society and close ones.

“I experienced too many difficulties from leprosy when it became visible. I had forgotten about my polio disability when I was affected by leprosy; leprosy gives pain psychologically, bigger than physically and socially. I was disgusted to look at my hands. When my deformity was visible, I had the most fearful and painful leprosy stigma from my house, relatives houses, tea shops, hospitals, barber shops, markets, hotels, work places, operation rooms in government hospitals and while travelling also. I lost all my fine arts due to my disease… I did not know that leprosy was curable.

“So many times I tried living with dignity but I failed and tried to kill myself by attempting suicide. Once I was in a forest, and saw a big snake near me; I hoped it might bite me and kill me. I tried to catch it, but it ran away without biting. From that day I hate snakes, because it behaved just like the human beings who discriminated me. I attempted suicide a few more times, but felt sympathy on myself because I wasn’t able to go through with it. Since then, the world had begun to appear to me as two different worlds within it: one world which had normal people and another which had people like me. At that point, I realized that my leprosy could break down the relationship between friends, mother and children, wife and husband, brother and sister, even God and Human. Even my only sister does not allow my nieces and nephews to talk to me, nor am I allowed to touch them.

“At that time I read an article about a village where four men had molested a girl and were caught by the police. In a public debate regarding their punishment, some people answered by saying they should be beheaded, hanged to death or struck with stones. But one person answered that we should use them in medical research, particularly in drug testing, instead of small animals. Suddenly I got an idea and searched over internet for research centre and found the address of one and went. I asked the doctors to use me for any drug testing of leprosy because I had already decided to kill myself. The doctor replied that there is no need for that, because leprosy was curable. He also told me that I can live like others who are living in leprosy colonies and leprosy rehabilitation centers.

“I was convinced that the problems in my life would not change. I was discriminated against yesterday, I was discriminated against today; I will be discriminated against tomorrow and for the rest of my life.

“After a leg surgery at the government hospital, where even nurses, doctors, and other medical professionals discriminated against me, I was admitted in a rehabilitation centre. The home was suitable for old persons who are homeless and hopeless, where I was feeling similarly, until I saw an admission form from the leprosy mission. I asked them to give me a chance to join in The Leprosy Mission Trust of India’s Vocational Training Centre in Vadathorasalur, Tamil Nadu to learn computer and they accepted. The Centre gave me good food, comfortable accommodation; life skill classes for mental development, and taught me self-care for my health as well. Mr. Tinson Thomas, the Principal of that centre, took special care of me professionally and personally.

“One day,he saw me and said encouragingly ‘Mohan you are an intelligent man; so you should have good future and the leprosy mission will always be there with you.’ He was one of first people who hoped that I live a happy life like everyone else.

“After that I attended a training on a stigma toolkit, conducted by CREATE Project of The Leprosy Mission. It allowed me dignity, courage, and confidence in my right to live in society just as much as someone without leprosy. As one of the trainers have said, “Leprosy is not from the past sin or curse of God; do not see them as untouchable because it does not spread from one another.” For the first time, I was happy to express my feelings, share my story, and engage with others. After finishing my computer course, luckily, I got an opportunity to join as a volunteer in CREATE Project.

“If the Leprosy Mission didn’t exist, I would surely have become a beggar or anti-social being. My family was cheated by me because the disease and the stigma collapsed all the future plans, efforts and hopes. The Leprosy Mission made me understand that I am a unique person and have no need to compare with any others.

“People are always asking me, “what is your goal?” Well, I reply that I want to be a role model to the people affected by leprosy, and a contributing member to the community. I never forget the help of CREATE Project, and I will fight against the discrimination until my last breath.”

Maksuda’s Story: A model of leadership and giving back to others with leprosy

Maksuda first met Lepra staff when she was diagnosed with leprosy and received treatment at a local clinic at Sirajganj, Bangladesh. At the time of her diagnosis, she was married; however, she returned to her father’s home with her daughter upon her divorce with her husband. Although Maksuda had successfully been treated for leprosy at this time, she was without her own home or source of income. She returned to Lepra’s Sirajganj office to share her story, as well as ask how she could help.

Maksuda soon signed on as a community volunteer with Lepra, helping to raise awareness of leprosy, its symptoms and how treatment could be accessed. She was also trained to recognise the symptoms of leprosy, which allowed her to examine and refer possible patients to proper treatment.

Lepra also loaned a sewing machine to Maksuda, for which she received training and developed a personal sewing business: her first source of income. Grateful for this opportunity, Maksuda also had a dream of her own: to own a poultry farm. With the encouragement from her peers, financial help of her mother, and earnings from her tailoring business, Maksuda started her poultry farm with 300 chicks.

Gradually, Maksuda expanded her business by applying for a local loan. She also completed a training course for owning and caring for livestock, which was provided by the district Government Youth Development Department in Sirajganj. This allowed her to grow her farm to 2000 chicks.

Despite the successful growth of her dream business, Maksuda wanted to do something to help other people who were living with leprosy or other diseases. With the help of the Lepra staff in Bangladesh, she was able to form a self-help group called Kalyani Pratibondhi Unyaon Dal. Serving as treasurer, she now provides each group member with 19000 taka to allow them to develop a livelihood and support their own families, as she was able to do with the help of Lepra. Maksuda sources this money to her group through her personal savings, as well as donations and income from the group businesses.

Maksuda also became a member of the Self Care Practice Group in Lepra’s “Reaching the Unreached” Project, where she practices self-care techniques with other members to care for the areas of the body affected by leprosy, and clean any injuries to prevent infection.

Maksuda’s poultry farm continues to prosper, and with the encouragement of Lepra staff, she has expanded her farm to a size of 3000 sonaly chickens. She has also added goats and cows into the mix. She has worked enough to earn approximately 25000 taka each month, which is enough to support her family, and send her only daughter to study a diploma in physiotherapy at a private institution.

Maksuda dreams that her daughter “will be a physiotherapist and serve the poor.”

Maksuda continues to conduct community health awareness campaigns for Lepra, examining and referring suspected cases of leprosy, and teaching self-care to people affected by leprosy and Limb Swelling Disease (Lymphatic Filariasis). She also regularly speaks to people in her community about the problems that she encountered, such as divorce, abuse and living with leprosy, and helps to support people going through similar situations.

’’I want people to know that Leprosy is curable and we can defeat it by building awareness on leprosy and its consequences through forming unity in the community.’’

Ajay’s story: Leprosy’s impact on families

Meet Ajay, aged 40, from Amroha, India. This is his story, told in his own words, to help raise awareness of stigma and discrimination this World Leprosy Day.

“When I was only fifteen years old, leprosy changed my life. I discovered a strange spot on my skin. I thought it would disappear with time. But it only got worse. Then I also lost the feeling in my hands and feet. My family and the other villagers kept me at a distance. They would keep staring at my deformed hands and feet. They were afraid they would become affected with leprosy as well. My mother was the only one who didn’t mind touching me and caring for me.

But then, suddenly, my mother died. I didn’t know what to do without her. Everyone else loathed my presence; there was not a soul willing to help me. I felt so helpless and lonely that I decided to leave my village. Afraid of all that I had to face.

It was only then that I went to see a doctor. He told me I had leprosy. He gave me medicines and treated the many wounds and ulcers I had contracted. ‘You will find a leprosy colony in Amroha’, he told me. ‘You can live there.’ And so I did. Where else could I go?

My wife, son, and I live an isolated life here, together with about thirty other families. I barely have the money to provide for my family. Every day I try to get a few rupees begging. I don’t have a choice. Nobody wants to employ me because of my deformities. My greatest worry is the future of my thirteen-year-old son Shivkumar. He doesn’t have leprosy, but he’s discriminated all the same. There is a chance he’ll never get married. People don’t want the child of a person affected by leprosy. They simply won’t accept a marriage like that.

It’s my dream that my son will never be forced to beg, and will be able to build a better life outside the leprosy colony. I don’t want him to go through the same misery I have gone through. He should not become the victim of my leprosy. I want him to pursue an education, as it gives him a better outlook for the future, but sadly that’s out of my hands.”

ILEP member, the Netherlands Leprosy Relief (NLR), report that Ajay has now received training in self-care and his son Shivkumar will undergo vocational training.

Click here for a short video from NLR about Ajay.

Neru’s Story: Losing out on childhood and schooling

Neru was only eight when she discovered she had leprosy. Her mother had noticed patches on Neru’s body and Neru also complained of numbness in her right hand and right leg. As time went on this numbness worsened and her hand began to stiffen and she could no longer open or close her hand, or hold things easily. Her mother took her to a government hospital where she was diagnosed with an aggressive form of leprosy and started on a multi-drug therapy. Neru did not realise how serious the diagnosis was and what impact it could have. “The doctor told me that I had leprosy, I did not feel anything but I could see my mother was very sad” she says.

Although Neru was started on a year’s course of the drugs, the prejudice and discrimination she faced showed that a physical cure was not all that she would need.

“I went to school the next day and the dinner lady, just as I approached her with a plate for food, shouted at me and told me that ‘you don’t need to come to school anymore’. After that me and the other students affected by leprosy ran from the school to home. I felt so sad about it and I cried a lot. I decided not to go school again and stopped my studies.”

This stigmatization of Neru extended to her family and her life outside of her education. “We were taking water from the hand pump near school,” she says, “People did not allow us to take water from that hand pump and were telling us that we may spread leprosy to other village people. We decided to go further away to get drinking water.”

After such treatment, it was hard for Neru not to absorb this feeling of shame: “I also felt that I have very serious disease which may spread to my family members so I just kept my distance from them and I was hiding my hand when people came to my home. I was frightened about the people in our village, I could not go anywhere to play.”

Although she had completed the year’s course of the multi-drug therapy, leprosy had caused Neru to lose out on her childhood; it had prevented her from being a part of a community and meant that for more than two years, she stopped her education.

As part of Lepra’s outreach, they give talks to communities, and one day they visited Neru’s village. They were able to explain to her mother how they could help her daughter with reconstructive surgery, and how they would be able to provide the funding, as well as pre- and post-operative physiotherapy. The surgery, along with the physiotherapy would mean Neru would have to stay in the hospital for 45 days. But with this treatment, she would regain full use of her arm and leg.

In the late spring of 2017, Neru had reconstructive surgery at the St Joseph Leprosy Centre in Madhya Pradesh. By this point, she had also developed a partial foot drop on her right leg, which meant she could no longer lift her foot at the ankle. She had a course of physiotherapy and we also gave her customised protective footwear to strengthen her ankle muscles. With our help, and through determination and family support, Neru was able to make a recovery. She could walk more easily and use her hand again.

She began to regain some of the confidence that she used to have. At the centre, she made friends and found new support from the people she met during her treatment. She also started to study once more and, as her community had heard our health awareness talks, they no longer feared the disease so she was able to use the village water pump again. However, Neru was still frightened to go back to school, worried of how she would be treated there.

Because Lepra recognizes the broad and damaging affects leprosy can have, they don’t just supply medical treatment, but emotional and practical support to individuals and family’s living with the disease. They visited the school and told the teachers her story and they were happy to allow her back, even after almost a three-year gap.

She even met the dinner lady who had turned her away: the woman took her hand, looked at it, and said how glad she was to see it healed. She said that she would look to see if any other child was showing symptoms of leprosy and refer them to the government hospital.

 At first Neru’s diagnosis seemed like an end to her childhood, her education and her place in the community. Now she has returned to school and what is more wants to become a teacher herself:

“I want to become teacher in our village and I will teach all the students very well,” she says.

World Leprosy Day: Up to half of leprosy affected people face mental health issues

ILEP releases interactive report on leprosy and stigma ahead of World Leprosy Day

ILEP is shining a light on the invisible scars of stigma ahead of this year’s World Leprosy Day–themed around ending the stigma and discrimination associated with leprosy–with the publication of a new interactive report.

The report reveals that up to 50% of people affected by leprosy will face mental health issues, such as depression or anxiety. (1) Depression is the most common mental health condition among persons affected by leprosy. There is also an increased risk of suicide among people living with the disease. (2)

Zero discrimination: ending the stigma of leprosy sets out the links between leprosy, negative social attitudes, gender inequality, myths, legal discrimination and mental health issues. The report argues that if we are to achieve zero leprosy, we must end the stigma and the laws and practices that discriminate against people affected by leprosy and their families.

The voices of women, men and children affected by leprosy are heard throughout the report. Rachna Kumari, member of the panel of women and men affected at the International Federation of Anti-Leprosy Associations (ILEP), and Community Mobilizer in the LEPRA Society in India, describes her experience:

“In India, humiliation and prejudice related to leprosy are very harsh, even more to a woman. My parents-in-law kicked me out of the house. My parents spent all their money supporting me and taking care of my children while I looked for medical assistance… Being affected by leprosy, especially if you are poor, is a heavy burden. There is no hope in the childhood and future of affected girls. Violence against women is threefold: gender, stigma and disabilities. It causes suicidal thoughts in women.”

Every year, more than 200,000 persons are diagnosed with leprosy worldwide. While the disease is easily curable if detected early, around 6 million treated people affected by leprosy experience life-long disabilities or discrimination, or both.

Many live in some of the world’s poorest and most marginalized communities. Individuals affected by leprosy often experience rejection, shame and social exclusion from work or school.

These negative attitudes can also create a barrier to treatment, hindering efforts to stop the disease transmission at a global scale. Stigma, prejudice, and discrimination can prevent people with the symptoms of leprosy from seeking and accessing medical help, which delays diagnosis and treatment.

ILEP CEO Geoff Warne says: “We understand that achieving zero leprosy is not solely a medical issue. We need to change the way the disease is perceived and talked about within societies. This is no small task. But it is heartening to see the success of NGOs and organisations of people affected by leprosy who are demanding that the human rights of affected persons are upheld.

“I believe that this report, and World Leprosy Day later this month, will help to break down barriers, raise awareness and support the efforts of those fighting for social inclusion and mental wellbeing for everyone affected by leprosy.”

Ends

Notes to Editors

[1]Lepra publication “Building the case for the integration of Mental Health services in leprosy and lymphatic filariasis programmes” 2018 https://www.infontd.org/resource/building-case-integration-mental-health-services-leprosy-and-lymphatic-filariasis?aresult=0

[2]Gurvinder Pal Singh, Psychosocial aspects of Hansen’s Disease, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3505422/

Read the report in English

Read the report in French

Valdenora’s Story: Amazonian trailblazer fighting for equality

Ahead of World Leprosy Day 2019, we meet inspiring people fighting against the stigma and discrimination associated with leprosy. From Brazil, this is Valdenora’s remarkable story of survival, recovery and advocacy.

Valdenora da Cruz Rodrigues was born on May 24, 1960 in the town of Arauiri, in the municipality of Tefé, Amazonas. Fifteen days after her birth, her biological mother died of Tuberculosis. After her mother’s death, Valdenora was delivered by her father to the couple who had baptized her. According to her adoptive parents, she was a very sick child, compromised by the lack of nutritional breastfeeding. When her adoptive mother was pregnant with her first child, Valdenora was taken care of by an uncle who had leprosy. At the age of 8, the first signs of her leprosy began to appear: spots, pains in the body, and edema in the hands, feet and ears.

At this time, it was common for people from the interior of the country and from the riverside communities to seek help through medicinal plants, healers and spiritual support. Her relatives used this type of treatment, but they were not successful. Children at the school where Valdenora studied, and where her adoptive mother was a teacher, began to isolate her when they noticed her signs of leprosy. Then, some parents pulled their children out of school. Because this was the only school in the community, Valdenora’s mother soon lost her job as a result of her daughter’s leprosy.

One day Valdenora’s parents took her to a doctor in the city of Tefé, which was 4 hours away by boat (they had no motor boat). After four visits to the city, she was diagnosed with leprosy in 1969 and the doctors ordered her hospitalization in the Antonio Aleixo Colony in Manaus. Her family mobilized to get her sandals (she had never worn any footwear) and clothes (because her clothes were made of sugar-bag fabric) so she could travel to the capital.

When her father took her to board the boat at Canoa, she was not allowed to travel with the other passengers, as they feared her leprosy. She was instead placed in a canoe, tied in tow to the boat. To protect her from the sun and the rain, her father wove a cover for the canoe.

The voyage to Manaus, where she would be hospitalized in the colony, took two long days and nights, during which the 9 year old Valdenora was unable to feed. She recalls being scared, alone and in tears. The years in the colony were very difficult, because as a child she did not understand why she was hospitalized and isolated from her family. In 1976, at age 16, she was discharged from the hospital and returned to her community; however, after a year she returned to the colony, after feeling stigmatized by the people of the community who treated her as the sick girl who returned. In 1978, the colony was decommissioned due to the ordinance that ended segregation for people affected by leprosy. In 1981, aged 21, she was hired by the Health Department of the State of Amazonas as a nursing assistant, then learned to be a midwife – a common traditional role for women in the community.  However, before being hired by the state as a midwife, she suffered prejudice in the company where she worked, for having been a resident of the colony hospital.

In that same year, she started living with Mr. Edigilson Barroncas, her companion until today. In that same year, along with other comrades she became involved in the social movement and in 1982 they founded MORHAN in Manaus – a Brazilian NGO for the rights of people affected by leprosy. On International Women’s Day in 1984 she was honoured by the Municipal Chamber of São Bernardo do Campo in the State of São Paulo.

In 1985, she was affected by a recurrence of leprosy, accompanied by a reaction. The development of a claw in her hands and feet caused her to experience revolt, indignation and disappointment, because at the age of 26 she was now prevented her from doing what she liked best: delivering children.

After much struggle, she was one of the first people in her state to achieve disability retirement after being affected by leprosy. In 1994, she and her partner adopted their only son. Adopting her son was one of her greatest difficulties in coping with stigma, because her son suffered a lot of prejudice as the child of people affected by leprosy. This hurt Valdenora and upset her a lot. Both she and her husband were prevented from attending parent-teacher meetings in the schools where their son studied.

Today, Valdenora’s son continues to help his parents advocate for the rights of people affected by leprosy. In 1999, she was elected to the State Health Council of Amazonas. In 2005, she was elected to MORHAN’s national board of directors and in 2006, she became a Board Member of the National Council for the Rights of Persons with Disabilities.

At 58, Valdenora is still a fighter for the rights of people affected by leprosy, women and people with disabilities in Brazil. She is a remarkable person for her commitment, strength and all that she has overcome.

Story provided by MORHAN.