When you think leprosy, you think Ben Hur. Or any other biblical movie starring Charlton Heston. We all vaguely shelf it as “that disease which made noses and fingers fall off” but feel reassured it is non-existent today. Actually, it’s not a thing of the past: leprosy is still very much prevalent today, just as it was 4,000 years ago.
In Malta, there is no leprosy: the last Maltese leper passed away last year well into her 80s. However, while the disease has been eradicated in the western world, in India and South America leprosy is still very common and, according to the World Health Organisation, some three million people are estimated to be permanently disabled because of leprosy.
“It is time for leprosy to be considered as an ordinary treatable disease and to dispel the myths surrounding it,” said Leah Pattison, director of Women In Need, a charity based in Nagpur, central India, which aims to help socially and economically disadvantaged women.
Ms Pattison’s charity is one of the beneficiaries of The Order of St Lazarus of Jerusalem, the Hospitaller Order set up in the 11th century and which is now based at Castello Lanzun in Mensija.
The Grand Commandery has donated an ambulance to WIN and has financially contributed to the setting up of a 10-bed hospice clinic. During a recent visit to Malta, Ms Pattison was honoured by the Commandery for her ongoing commitment to lepers.
Ms Pattison, 39, from Newcastle, England, has lived in India for the past 16 years and set up the charity after she herself was diagnosed with leprosy when working as a volunteer in India.
“I had no plans to go to India really. When I graduated in fine arts, in 1995, I was passionate about Japan and wanted to go there for my gap year. But, somehow, things fell through and I went for my second choice – India,” she said.
She was determined to experience real life India and not just the tourist trail. By chance, she was put in contact with a hostel association that took care of women with leprosy, helping them to overcome their difficulties and coping with lots of social stigmas.
The initial months – her first ever experience of sheer poverty – were quite hard. She was working in the oldest leprosy colony in India, set up in 1926 by a disciple of Ghandi, Manohar Diwan. “The experience made me think about who I was in relation to the scheme of things. I realised how fortunate I was, something which I never really thought about,” she recalled.
However, as time passed and she got to know more and more real people and their stories of suffering, she found it difficult to leave. She spent three years travelling back and forth from India to the UK, each time renewing her visa. Then, a few days before her 25th birthday, she was diagnosed with leprosy.
“I was only diagnosed by coincidence. A visiting doctor noticed some light-coloured patches on my wrists. I’d put them down to eczema. I hadn’t noticed a loss of sensation in the patches until the doctor pricked them with a pin and it didn’t hurt much,” said Ms Pattison, explaining she had been more familiar with the severe deformities leprosy can cause and not the early stages.
How did she get it? Is it so contagious?
“It’s not, really. It’s a myth leprosy is infectious with mere skin to skin contact. It is spread from person to person in respiratory droplets but you need to be in the advanced stages to be infectious.”
She doesn’t know how she got it because at the colony everyone was being treated, so they weren’t infectious. “It’s just as likely that I caught it outside the colony, crushed with 10 other passengers in an autorickshaw that’s meant to take three, for instance.”
Back in the UK, her family was extremely worried but she decided to stay in India for treatment: “I felt people there knew how to deal with it better than in the UK.” She never felt particularly unwell and after nine months of a multi-drug therapy, she was completely cured.
The shock and the fact that she experienced the disease first hand, pushed her into taking the decision to stay on. She founded the charity a decade ago, together with Usha Patil, a former patient at the leprosy colony. “She was only four years my junior and she was unique in that she wanted to leave the colony. She could see a life beyond there after she was cured,” said Ms Pattison.
They trained as paramedics and set out to work with women in their communities, rather than hiding them in a colony. “We try to help with the problems leprosy can cause — often drugs and medical care are the least of it. These women have been through terrible experiences, abandoned by their families, left very ill in extreme poverty.”
Unfortunately, even in 2011, there’s still superstition and stigma surrounding the disease: “People still don’t come forward until they’ve developed severe deformities. Many families choose not to keep individuals who’ve had leprosy within the home, even if they’ve been cured. They fear it’s a curse,” said Ms Pattison.
She recounts the story of an elderly mother-in-law who was cured but disfigured. Her family had just put her in a back room and left her to die. She was half-dressed and the ulcers on her legs had maggots in them when WIN found her.
Another leprosy sufferer, Chindabai, had been poked in the eye by her brother in an attempt to make her abandon her shack. “He blinded her but she still remained, cooking for herself and her dog. When we found her, she was totally disfigured from scalding.”
Chindabai now resides at the WIN shelter and is one of the women who “inspire” Ms Pattison. “Even though she’s lived through such horror, she’s so incredibly positive. Her bravery is just inspirational. The women we work with strengthen our human spirit,” she said.
The main aim of WIN is to spread the right information. “Leprosy is not a disease which kills you but it can make you suffer a lot. If there is much more awareness, it would be nipped in the bud and cured before any physical deformities occur.” The loss of body parts is normally due to ignorance and neglect; it doesn’t happen overnight.
Ms Pattison finds that culture in India is a major obstacle. Men with leprosy suffer a lot of social exclusion but their wives stick by them, care for them and provide for them.
Women, on the other hand, are usually dumped by their husbands if they get leprosy. “So they end up on the streets, begging.”
The financial assistance of the Grand Commandery will enable WIN to provide resources to restore the women’s dignity. “We now have plans for satellite projects in other parts of India. Our aim is to help lepers lead a dignified life,” she said.
Donations to Women In Need can be made through www.stlazarus-mt.org or to The Grand Commandery of the Castello BOV Account 40018632200.
For more information about Ms Pattison’s work see www.women-in-need.co.uk