Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

Siphi and Bela’s new home – and an end to stigma

Partnership Officer Rachel Snart recently spent two weeks visiting India to see how your gifts are transforming lives there. One family she met found that for them, leprosy meant they were ostracised by loved ones. We were able to help, but stigma in the community meant further steps had to be taken to ensure a happier future. Rachel writes:

Staying at The Leprosy Mission’s Naini Hospital in Uttar Pradesh, we visited villages in the surrounding area to learn more about the impact our projects are having. Driving out there, I became acutely aware that the more remote a place is, the poorer the community.  We drove upon dusty tracks that weren’t even roads and needed to walk the last part of the journey because the car couldn’t drive over the rocky terrain.

Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.
Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

In one village, we met Siphi. His wife, Bela, was diagnosed with leprosy a couple of years ago. They are the only family in their community who are affected by leprosy. In remote areas like this, where people don’t often know much about leprosy, people with the disease are often singled out and ostracised.

Bela’s own family stopped seeing her because of her leprosy – she wasn’t even invited to her sister’s wedding. She felt so rejected and unhappy with her lonely life. In the beginning, her sons didn’t know anything about leprosy either, so they were extremely wary and refused to sit near her a lot of the time.

Bela first started to notice she had a problem when she started to get a burning sensation in her hands. Then she gradually began to lose all feeling in them. She was worried that it would be something serious, so she visited the nearby government hospital, which diagnosed her and referred her to Naini Hospital where they knew she would get the specialist care she needed. There, she was given multidrug therapy (MDT), which cured her leprosy. The ulcers she had developed as a result of the disease were also treated.

At the time the family were living in a ramshackle hut made from sticks and cow dung. The lack of a door meant animals wandered freely through the house. It made cooking food very difficult and it didn’t help their status in the village. Already affected by leprosy stigma that meant unkind jibes from neighbours, they felt isolated and ashamed by their living conditions.

“It created so much tension within our family and relationships because we became stressed and angry at the way we were being treated and would often shout at each other,” said Bela.

“The state of the shack only made things worse. In the rainy season, the water would come pouring in and ruin our clothes and beds. Food would spoil and we would have to keep repairing the roof.”

Siphi with his sons in their new home.
Siphi with his sons.

As if this wasn’t bad enough, when the effects of Bela’s leprosy became visible, the couple made a very tough decision which might be hard to understand. They agreed that Bela would live in the small shed where they dried and stored the cow dung they use as fuel. She ate with her own separate set of utensils, and her children wouldn’t even use the same bar of soap as their mother, so deep was their fear of leprosy.

The decision was made to protect the whole family from the judgement from the other villagers. It broke my heart to hear about the sacrifice Bela made for her family.

As Leprosy Mission staff assessed Bela’s situation, they decided the family would benefit from a new house. But it was on a community officer’s follow-up visit that we became aware of the heartbreaking decision the family had made. As a result we set up an awareness-raising programme in the village to try and educate the community about the realities of leprosy.

Siphi said that over time, people have become kinder towards the family as they have begun to understand more about leprosy. The couple decided it was now safe for Bela to live with the rest of the family again, in their new and improved home.

The bricks for Bela and Siphi’s cost around 7,000 rupees (Rs), which is around £70. Bags of cement are 300Rs each which is about £3. They used 55 bags which comes to around 16,500Rs (approximately £165). All other materials such as roofing, metal bars, wooden structures, doors and windows brought the total to 125,000Rs, or roughly £1,300. Siphi is a builder, and his sons and some neighbours helped him construct the house, meaning they did not have to pay for labour. It struck me how much of ‘drop in the ocean’ this is compared to a house here in England.

Siphi stands outside his new home
Siphi stands outside his new home

Siphi and Bela were thrilled with their new home.

“There is very little tension in our family now,” said Bela. “People will come and spend time in our home and I can start trying to do housework again. My children will sit next to me and I can be close with my family once again. I have my family back.”

It was so wonderful to see this family accepted by their community, full of pride and hopeful about their future. It really brought home to me why the awareness-raising work done in India is so vital. There are still so many negative attitudes towards leprosy, and these ingrained beliefs take time to change. With your help, this is happening – and changing the lives of people like Siphi and Bela.

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Unreported World: India’s Leprosy Heroes

Unreported World: India’s Leprosy Heroes

We’re really excited about this programme on Channel 4 tomorrow 25 March.  It starts at 7.30pm, so don’t miss it!

This award-winning current events programme is the first of a new series and reporter Seyi Rhodes meets some of the remarkable people fighting back against leprosy in India, where millions affected by the disease are pushed to the margins of society and ostracised by their families and friends. 

It features the work of The Leprosy Mission including interviews with Dr Premal Das, superintendent at our Naini hospital, the largest leprosy referral hospital in India.  The programme also features people who have been shunned because of leprosy, the surgical techniques used to correct deformity caused by leprosy, and the bravery of patients striving to overcome stigma.

You can donate to our work, safely and securely, through JustGiving.

 

India’s Leprosy Heroes, Unreported World

Friday 25 March 2011
7.30pm
Channel 4

Dr Premal Das examines a patient's handIn the first of a new series of the award-winning current events programme, Channel 4’s Unreported World meets some of the remarkable people fighting back against leprosy in India, where millions affected by the disease are pushed to the margins of society and ostracised by their families and friends.  The programme reveals that the numbers of new cases in some areas could be much higher than previously estimated by the Indian government and the World Health Organisation.  It features the work of The Leprosy Mission (TLM) including interviews with Dr Premal Das, superintendent at TLM’s Naini hospital, the largest leprosy referral hospital in India.  The programme also features people who have been shunned because of leprosy, the surgical techniques used to correct deformity caused by leprosy, and the bravery of patients striving to overcome stigma.

You can find out more information by visiting the Channel 4 website