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It is World Leprosy Day on 25 January.

21 January 2015

25 January marks World Leprosy Day. In this blog we look at two of the real life stories behind the work of the charity Lepra, which has just received funding from the Big Lottery Fund. 

Leprosy is an infectious disease of the skin and nerves which if left untreated can cause disability and blindness. It is one of the world’s oldest diseases however last year 126,913 new cases were diagnosed in India, the highest in the world according to the World Health Organisation.

The Big Lottery Fund is awarding £485,645 to UK charity Lepra to help around 120,000 people suffering from leprosy and elephantiasis in Bihar, India. Elephantiasis, or lymphatic filariasis, is an extremely painful disfiguring disease transmitted though bites of infected mosquitoes, causing the swelling of parts of the body. Lepra’s project will benefit poverty-stricken people through raising community awareness of causes, symptoms and treatment along with improving sanitation and hygiene in 465 villages.

Lepra’s work will help treat people like Kalpana and Sita Devi below:

Kalpana’s story:

Kalpana-in-her-shop

Kalpana and her daughter in her shop.

Kalpana was only 17 when she was married to Nayan Yadav, a soldier in the Indian Army. Due to poverty and tradition, 69 percent of girls in Bihar are still forced to marry against their wishes and before the legal age of 18 years.

A soldier of the Infantry Regiment, Nayan was frequently posted on India’s borders, seeing his family only twice a year. On one such visit he discovered patches on Kalpana’s body and suspected she had leprosy. He was angry that Kalpana’s family kept this from him at the time of their wedding. Her in-laws suspected Kalpana might have inherited the disease from her family. Behind closed doors, Nayan started to beat Kalpana. Other family members ignored her cries. This violence continued for five years.

Kalpana dreaded Nayan’s home-coming. In one such episode, Nayan broke her leg with relentless beating. She was taken to the hospital by her neighbours. After the treatment when Kalpana returned home, she found all her belongings thrown out. Her husband and in-laws asked her to leave their home immediately. With her four-year-old daughter, Anshu Priya, Kalpana returned to the cramped conditions of her parents’ home and has been living there for three years.

Kalpna first came into contact with Lepra in 2011 and received treatment for multi-bacillary leprosy. She has completed the entire course of multi-drug therapy which usually lasts between six months to a year. The patches on her body have completely disappeared and Kalpana, for the first time looks healthy and happy. However, her emotional scars of rejection by her husband and his family continue to torment her.

According to the last Family Health Survey of India, 59% of women in Bihar face domestic violence. A woman is twice as likely to face domestic violence if she has contracted a disease like leprosy or HIV.

With Lepra’s help Kalpana has now filed for divorce, demanding alimony and child maintenance for her daughter, now seven.

Meanwhile, with Lepra’s financial support of Rupees 30,000 (£300), Kalpana has started a small groceries shop attached to her parents’ home. She earns around Rs250-300 (£2.50 – £3) per day and feels proud to contribute to her parents’ household instead of being a burden on them. Anshu Priya is now attending a local primary school and seems to be thriving in her grandparent’s home. This year, Lepra Bihar plans to employ Kalpana as a community ambassador.

Sita Devi’s story:

Sita Devi

Sita Devi

Sita Devi’s husband is a daily wage labourer, earning roughly 100 rupees a day or less. (£1).
About 10 years ago, Sita Devi’s leg started swelling and became very painful. Her husband took her to see many doctors which resulted in a spending of Rs.5,000 (£500). The doctors didn’t tell them what her condition or disease was and prescribed very expensive injections which the couple couldn’t afford.

Sita Devi was worried about her condition and was deeply unhappy and depressed because she couldn’t leave the house or carry out any household work like cooking, washing or even bathing. She felt isolated and shunned. Her leg continued to swell, her fevers persisted and acute attacks worsened. It was around that time an elderly neighbour who also had the same condition. She approached Sita Devi and mentioned Lepra’s treatment regime. This lady had been on Lepra’s treatment for a while and as a result, the swelling in her leg had substantially reduced.

Accompanied by her husband, Sita Devi went to Lepra in early 2013 where she was diagnosed with lymphatic filariasis and given medication for the fevers. Lepra’s physiotherapist demonstrated self-care techniques that included a set of practices like washing, massaging, exercising and elevation which had to be carried out on a daily basis. Lepra also prescribed her a pair of shoes that were exclusively made for her.

Sita Devi is a much happier person today as she is able to carry out all her household chores and attend social gatherings like weddings or just meeting her friends in the neighbourhood. She said she feels like doing more with her life and is considering buying a cow so she can sell the milk and make some additional money for her household.

She said: “Anyone can get this disease but if we can have the courage to face it we will overcome it and help others too”.

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