Mithu’s journey to a new life

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Mithu in 2013, as an inpatient at Anandaban Hospital, where she was treated for leprosy reaction.

When we met Mithu in 2013, it was four years since she had been diagnosed with leprosy and her journey to Anandaban Hospital had been a long and painful one.

Growing up in a very poor family in a remote area of Nepal, Mithu started work – as a cleaner in a hotel – at the age of 13. She had been working there for two years when she started to develop loss of feeling and swelling in her hands, which soon made her job difficult. The local health centre was not able to offer her any advice. Scared and not knowing who to turn to, Mithu was listening to the radio one day when she heard about a clinic in Surkhet District – and she decided to make the journey there in the hope of finding out what was wrong.

Travelling alone, it took Mithu three days to reach the clinic – two days of walking and a day’s bus journey. She didn’t tell her parents where she was going or what she thought was wrong with her. Then her worst fears were confirmed. Mithu was given multidrug therapy and sent away. She didn’t want to tell her parents about her leprosy, but in the end, she felt forced to. The signs of the disease had become visible – her nose had partially collapsed.

Because she had leprosy, Mithu was asked to leave her job at the hotel and had to return to her village. Once her neighbours found out about it, they began to stigmatise her.

“When I used the common tap or wash area, people would clean it before anyone else would use it. Sometimes I would not go out – I just stayed at home and cried.”

Mithu’s sister-in-law did not even want her in the family home and refused to let her touch her young son.

“Either Mithu leaves this house or I do. I will go home to my parents,” she told the family.

Mithu loved her nephew very much and was hurt that she couldn’t look after him any more. But she would not leave home and in the end, her sister-in-law made the decision to leave instead, only returning when Mithu became an inpatient at Anandaban. She was showing signs of leprosy reaction and was referred there for treatment in 2013.

At Anandaban, Mithu was diagnosed with severe leprosy reaction, which can cause intense pain, skin nodules, fever and nerve damage. It took more than a year to successfully treat the reaction and Mithu was scared about what the future could hold for her.

“At Anandaban I have made friends and have people to talk to. At home I will be alone,” she said. “While I have been away my sister has also been diagnosed with leprosy. I have cried a lot because I think it is my fault and that everyone will blame me. How much blame will I face at home when I go back? I don’t know what I will do.”

Mithu, who had never been to school, was learning to read and attending other education classes at Anandaban. She wasn’t sure what her future held but was reluctant to go back to her village due to the stigma she had faced, even though she missed her family.

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Mithu at Anandaban in 2016, where she now lives and works after finishing treatment.

Recently, we were thrilled to meet Mithu again and hear about the amazing transformation in her life since she first came to Anandaban. Now 22 and completely well, Mithu has had reconstructive surgery on her nose. She’s still living at the hospital, but this time as an employee, with her own home next to the self-care unit where patients learn to look after their leprosy-affected hands and feet.

“I clean, cut the grass, look after the animals and the garden,” she said. “I also help the patients with their self-care.”

Mithu shares her life at Anandaban with another person who has helped her find love and acceptance there – her husband. He is also affected by leprosy and has stayed on at the hospital following treatment to work at the self-care unit. They’ve been married for a year and Mithu smiled widely as she told us about their life together.

It’s clear that her time at the hospital has not only helped Mithu heal physically and emotionally, but has also given her a new purpose in life, new friends and much happiness. It’s what makes Anandaban Hospital such a special place – and why people like Mithu appreciate your support and prayers for The Leprosy Mission’s work in Nepal so much.

Find out more about the projects you support in Nepal.

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Nandlal’s hope for a new home

 

Lal Bahadur Tamang and Kanchhi Maya Tamaz
Nandlal and Muna

Nandlal, 58, and his wife Muna live in Kavre District, Nepal, together with their four grown up children. Before the earthquake, Nandlal had overcome leprosy, going through long term treatment at Anandaban Hospital. With support from the hospital, he had started up his own business – a grocery shop – and was also keeping goats. It was a far cry from the life of suffering he experienced before being cured of leprosy.

25 years ago, he noticed strange symptoms – tingling sensations in his arms, and blisters on his hands and feet. Traditional healing had no effect, so Nandlal eventually visited his local health clinic and was horrified to be told he had leprosy. He told us he was afraid because the stigma surrounding disease was so bad.

As his symptoms got worse and developed a terrible ulcer on his leg, a neighbour suggested he go to Anandaban. By the time he arrived, the ulcer had become infected and had made him seriously ill. Thankfully Nandlal finally received the care he so desperately needed – and was cured of leprosy.

His ulcers have never returned, thanks to the fact he follows the self-care regime he was taught at Anandaban. And happily, The Leprosy Mission’s stigma prevention work in the area means he has been able to carry on with life without prejudice from the community.

But Nandlal’s life changed forever when the earthquake hit. The whole family was in the grocery shop attached to their home when it happened. Mercifully, the shop did not collapse and they escaped uninjured,  but the house was destroyed. Three of their five goats were also killed when their shed collapsed.

The family lived under tarpaulins, until they received emergency aid – thanks to your generous response to our earthquake appeal – that enabled Nandlal to buy corrugated sheets to make a temporary shelter. The shelter is a short term solution, but they need a permanent home.

Right now, Nandlal is unsure what the future holds. The effects of leprosy on his hands and feet mean he is quite limited in what he can do – but the death of his goats and his damaged, unstable shop mean he’s worried about having enough money to get by. Most of all, the family need a new home that would keep them safe and sheltered from the elements.

You can help Nandlal and others like him get the fresh start they need. Nandlal has been through so much because of leprosy, disability and now the devastation of the earthquake. A gift to the Rebuild Nepal appeal could ensure that he will have a fresh start.

A gift of £20 will provide a toilet and sink for a new home. And £55 will pay for a pallet of bricks to get building started. You can make a difference to people like Nandlal today.

 

Rachel talks to self-help group members.

Life in a leprosy colony

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Rachel talks to members of the self-help group at Nav Narman

In the second of her blog posts from India, Partnership Officer Rachel Snart continues her journey with a visit to two leprosy colonies.

As part of my visit to the area surrounding Naini Hospital, we visited the leprosy colony of Nav Narman, to see a self-help group that had been set up through our pioneering Challenging Anti Leprosy Legislation (CALL) project, which has successfully fought for the rights of people affected by leprosy and lobbied for discriminatory laws to be abolished.

It’s hard to believe that in the 21st century, many people affected by leprosy find it hard to get an official identity card. Without an this card, they can’t vote or receive government benefits. One law still allows leprosy to be cited as a reason for divorce. The CALL project has also worked to help people find sustainable employment. I sat and chatted to a group of women about how it had transformed their lives. One of them was Kalpana.

She explained that CALL had given her and her friends more power to challenge and fight for their human rights. To create sustainable employment, each member of the group had put into savings the small amount of money they could afford each month. They told me of the pride they felt in having their own pot of money to work with. These savings have enabled them to set up a business selling jewellery.

Kalpana, a member of a self-help group supported by The Leprosy Mission
Kalpana, a member of a self-help group supported by The Leprosy Mission

Today, they told me they can hold their heads high, proud of having a business rather than begging to get by. Kalpana was thrilled with how far the group has come in the last five years.  After starting with no ID cards and no employment, begging for survival, they now have a self-help group, savings, and an income. Their ID cards also enable them to receive rations of low-cost rice, oil, sugar and salt from the government.

Kalpana also told me more about her own story. She was rejected by her family a long time ago when she was first diagnosed with leprosy. The stigma of the disease meant that her younger sister was finding it difficult to marry. As soon as potential suitors found out Kalpana had leprosy, they didn’t call again. She felt as if she was a nuisance to her family and made the decision to leave home.

“It was painful to leave my family,” she said. “I still remember what it felt like to be rejected. I still feel the pain like it was yesterday”.

A family member quietly told her about a leprosy colony far away where she would feel more at home and find other people like her.

Thankfully, Kalpana did find acceptance. She began to make friends and even met her husband there. When they first met, he took her to The Leprosy Mission’s hospital in Naini to get proper care and treatment. They went on to marry and have three daughters and two sons together. Kalpana has high hopes for her children’s futures and told me how two of them are receiving support with their education.

As Kalpana spoke of her new life and her children, her face lit up and I knew it was so important to carry on this work for communities just like this one. Until they are treated as equals by society, we haven’t finished.

Later that day, we visited a second leprosy colony called Karela Bagh. How different this colony was to Nav Narman. In a bid to help people to get away from a life of begging, the government supports Karela Bagh, making sure residents have access to running water and toilets. They have also been supplied with ID and health insurance cards.

Tanik, the 60 year old leader of the colony, told us that they survive by cattle rearing and growing crops as well as receiving some donations from locals who want to help.

It was good to see that there is a good working relationship between the colony and the government. During wet weather, the dirt track leading to the community was often impassable. Tanik successfully applied to the government to get the road concreted, improving access for those with disabilities.

Tanik, leader of the leprosy colony, with fellow resident Rama Shanker.
Tanik, leader of the leprosy colony, with fellow resident Rama Shanker.

Tanik introduced us to a man called Rama Shanker, who told me he had endured years of terrible discrimination in his village as a result of leprosy. His own wife brought him to the colony twenty years ago, and left him there, saying “Don’t allow him to come to my house. My children will not be married if he is at home with us”. He was sad that she deserted him, but said he understood that she was trying to protect the family from stigma.

Rama used to love his job as a bus driver – something he had done for ten years before he got leprosy. However, as his feet and hands became disabled and developed ulcers, he could no longer drive the vehicles.

“I was really sad and ashamed when people asked me why I looked like I did. I had to leave the bus company because I physically couldn’t do my job any longer,” he said.

Sadly, Rama received no pension or help from his employer despite a decade of faithful service.

I asked him if his wife and children ever came to visit him. “No,” he said. “She only started to visit after the children were married.”

Rama sighed sadly as he told me how he missed his children’s weddings and he has also missed out on being a grandparent. He brightened when he said that his children do occasionally now visit, however.

The government has provided a wheelchair for him and he now finds it much easier to get around, even coming second in a race for disabled people last year.

“Every person around should be educated all about leprosy so that more people are treated like they are the same as everyone else,” said Rama. “People should realise it is a common ailment like other diseases, then nobody else would have to leave their families in the future and have the sad life that I did. Changing some of the laws for a start would help to change people’s attitudes.”