After setting out to work as a volunteer at a leper colony in India, Leah Pattison has made helping outcast female victims of the disease her life's work. She talks to Sarah Foster about her amazing mission.

THEY were words that no Western person ever expects to hear: "I'm sorry to tell you, you've got leprosy." Sitting in the clinic, hearing them from the specialist, Leah Pattison felt she was looking at the scene through a camera, that it couldn't really be her he was talking about. "I'm the girl from England. I'm invincible," she thought, but facing up to the reality of what she had believed impossible, the words sounded hollow.

Having arrived at a leper colony near Nagpur, in central India, as an art graduate, Leah found herself drawn into a completely alien world which, inexplicably, had some kind of pull on her. Prior to leaving, she had thought her life was mapped out - she was 23 and looking forward to an exciting future as an artist, and her trip to India was simply an adventure, a final fling before knuckling down to the real business of work.

It was only after returning home at the end of her six months there that she realised it had been a life-changing experience. "I just immediately wanted to go back, without any clear direction. I had a sense of wanting to be more involved, to see more," says Leah, now 32.

During that first six months, she had been shaken from her comfortable view of life more forcibly than she would have thought possible. Charged with helping young girls at the colony's hostel with their English and doing odd jobs, including changing patients' dressings, she had come face to face with some horrific sights and heard some terrible stories.

One woman, in particular, sticks in her mind. "She'd lost all her fingers and she had a very severely deformed face. She had lost the lower part of her lips and her tongue would just hang out. She would use her hand to push her tongue into her mouth and hide her face," says Leah.

Meeting such people made Leah re-assess her own life and put her privileged background into perspective. She's currently back at her parents' beautiful cottage in Frosterley, Weardale, after coming home to attend an event to mark International Women's Day at Buckingham Palace last month. Looking out across the expanse of countryside, she says: "Going to the colony made me really look at who I was. It made me think about what I had and how lucky I was. I was lucky to realise that at that stage."

Determined to play a fuller part in the life of the colony, but unsure of how and without any medical training, she began making regular six-month trips there, coming home only to renew her visa. Then she got the opportunity to enrol on an intensive paramedics' course. It was just before she was due to start that she began noticing changes to her skin.

"I had noticed some light coloured patches on my left wrist. I was suntanned so I thought they might be something to do with having a watch on or some allergy. I didn't pay any attention to them," she says.

When she was finally diagnosed with leprosy, around four months later, Leah says that for the first time, it caused her to stop and think seriously about what she was doing. "It made me think about the direction I was going in and whether this was where I wanted to go in my life. I came to the conclusion, after thinking long and hard about it, that this was really what I wanted to do."

Although her parents were initially shocked by news of their daughter's condition, they soon came to terms with it, supporting her in her decision to remain at the colony. "It was their worst nightmare, but my mum's very practical so she phoned the London School of Tropical Medicine and once my parents knew the facts, they were able to deal with it," she says. "My dad joked: 'I'll have the bell and stick ready for you'."

Leah was prescribed a nine-month course of drugs and soon noticed that the patches were disappearing. She says that nowadays the bacterial infection is easily treatable, which makes some of the extreme cases she's seen all the more tragic.

The deformities associated with leprosy arise purely through lack of treatment and neglect, with ignorance playing a major part in this, especially in the cities. With this in mind, Leah and her friend Usha Patil, a former leprosy sufferer she met at the colony, decided to begin working with female victims of the disease in Usha's home city of Nagpur. Leah says women's low status in society means it is they who bear the brunt of the stigmatisation attached to it - a fact brought home to her through personal experience.

I was told: 'Make sure you don't tell anybody'. The woman who gave me my medicine was obviously very uncomfortable about it, which I found very disturbing. I found out that the man who was running the colony wanted rid of me - I think he felt that it would create a very bad impression. That was the first time I thought: 'Leprosy really is a problem'," she says.

Poorly equipped but full of enthusiasm, Leah and Usha met with the authorities in Nagpur to try to canvass support. She says the reaction was at best, sceptical. "We just used to go around with a little bag and catch buses and rickshaws. I think they thought Usha and I were a bit mad. They designated one slum in the city for us to go around with one of the Government licensed technicians."

And so began their mission, roaming the many slums of Nagpur, finding women who had been cast out from their families and left to beg and live in squalor. They offered basic medical treatment and tried to build bridges with relatives and dispel the myths surrounding leprosy, including that lepers should automatically have to beg and are bad people. More than that, they offered a listening ear to women who had never been listened to before, finding out what they wanted and how they could best be helped.

Leah says this wasn't always easy: "A lot of these women aren't very easy to talk to. They've had a horrible life and can be aggressive. It's difficult, at times, for Usha and me to break through that barrier. Some of them had this rather strange idea that I was here from England to steal their kidneys."

As well as facing suspicion, and sometimes hostility, from the local community, Leah also had to come to terms with living as an Indian in Usha's family home, which she did for a year-and-a-half. "They didn't have running water and they certainly didn't have a spare room. We all slept in a line, and in the summer, we slept on the roof. One of the neighbours used to drag his daughter out by the hair and beat her up because he used to get drunk, and that was just everyday life," she says.

In 1999, Leah and Usha set up their own charity, Start, with bases in both India and Britain. They have since expanded their services to include things like providing training, legal advice, adequate housing, and meals-on-wheels for those incapable, due to their deformities, of cooking for themselves. Perhaps most startlingly of all, they have won the officials' respect, and now enjoy the full co-operation of local doctors, some of whom even provide their services for free.

The next step is establishing a proper clinic, to act as a base for the charity's work and where on-site treatment can be provided. Frustratingly, Leah and Usha have had to wait three years for this to happen, due to Indian red tape, but on the day I meet Leah, she says she's received an email suggesting that within a week, they'll have their licence. She's already identified a building and a vehicle and can't wait to get things up and running on her return to India in June.

I part from Leah's company after listening, engrossed, to her for a solid two hours, thinking that if anyone can make it work, and help to turn the tide of ignorance and needless suffering, she can.