Focus on people living with leprosy

Sister Adelheid Nestele strode down the path in the garden of the Rawalpindi Leprosy Hospital, her white coat flapping behind her in the slight breeze. She stopped to wave cheerfully at a family come to visit a relative, before striding confidently towards a simple structure that lay in the shadow of the main hospital building. "One of the many misconceptions about leprosy is that it is easily communicable through touch," she told IRIN, pausing in mid-stride to motion an old woman towards her. She embraced the woman, chatting easily in almost unaccented Urdu and then walked on. "That woman has leprosy," she said. "But it's not contagious, not in the way people think." Nestele, a German missionary, works as a physiotherapist with leprosy patients at the hospital in Rawalpindi, a former garrison city during British colonial rule, which nestles alongside the Pakistani capital, Islamabad. The hospital was set up in 1904 by an American professor who taught at the local Gordon College, a missionary school, after he chanced upon a group of lepers who lived on Rawalpindi's outskirts in accordance with a colonial-era law which required all people seen to have the illness segregated from the community. "The good thing about World Leprosy Day and the fact that it has been celebrated annually for the last 51 years is that people who have the disease are now not afraid to say they have it and thus manage to get treatment in time," Nestele said, as she led the way into a lab where two sober-faced technicians lifted their eyes from their microscopes to observe the visitors. Leprosy, a chronic, mildly contagious disease, is caused by a germ which affects mainly the skin and nerves. Two main forms are endemic: the infectious type which develops in patients with low immunity and the non-infectious type which affects high-immunity patients. "About 70 percent of our patients have non-infectious leprosy," Dr Aamer Wasim, a dermatologist at the hospital, told IRIN. "But even the ones that have infectious leprosy are curable." Since multi-drug therapy was developed, treatment for the disease has evolved to the stage where it can be treated and cured within two to three years, especially if patients, who are always encouraged to come for treatment as soon as possible, seek a remedy early. "The incidents of the disease are almost the same in Pakistan," Nestele said, as she led the way to a ward where a bearded health-worker stood and explained the symptoms and treatment of the illness to a group of patients who all listened attentively. "But, now, the decline of the figures is because policies of treatment have changed," she said. "The treatment can take from six months to 2 years and we have a surveillance time that is up to 5 years. So that makes the numbers drop tremendously and that is due to World Health Organisation (WHO) policies." The health worker's lecture to the patients, all suffering from various stages of the illness, was important because the hospital's policy focuses on ensuring that patients learn as much as they can about the disease, Nestele explained. "Leprosy is only contagious until you've given the patient the first dose. Only undiagnosed, untreated cases are infectious. As soon as a patient is brought in and given the first dose, within 48 hours, 99.9 percent of the germs are killed," she maintained. The 72-bed hospital offers free treatment to patients, some of whom sometimes travel long distances to seek remedies. Physiotherapy is considered particularly important to help patients avoid becoming crippled. A General Skin Clinic and General Physiotherapy Department, combined with an orthopaedic shoe shop to provide more services to patients. Since 1995, the leprosy outreach programme has been combined with a prevention of blindness programme which receives roughly 20,000 eye patients every year. WHEN AYUB WAS KING Inayatullah, a bearded old man who appeared to be in his early seventies and who sat with his feet curled up underneath him on a hospital bed, told IRIN that he had first contracted the disease in the late 1950s. "I fell ill with this when Ayub became king," he said, in an obviously vague reference to the year when the former military ruler seized control of the country in 1958. On the bed next to him, another old man, roughly the same age, rolled his eyes skywards as he tried to remember the exact year when he was diagnosed with leprosy. "It was the year 1960," Mohammed Aslam said thoughtfully, his speech slow and hesitant. "You have to remember that this disease can sometimes take ages to show up," Nestele explained. "The incubation period can be anything between one year to 30 years!" She led the way to another ward, where a couple of other old men sat in the verandah, trying to soak in the late afternoon sun. She knelt to pat one kindly on the back and he turned his face upwards to reveal a gaunt, unnatural face with no eyebrows and two red balls where his eyes must have once been. The other old man gazed keenly at his visitors, looking away only when he spat into the palm of his hands. He flicked the phlegm away surreptitiously before Nestele looked up. "Your picture has been taken," he whispered to his blind companion, as the missionary guided her visitor towards another ward. Outside, another group of patients and their relatives sat in the sun. Nestele walked into the middle of the group and hugged everyone in turn, stopping and kneeling to grasp a grizzled old woman - whose hands just had stubs for fingers -close to her chest. "Come," she said, bright-eyed and seemingly unaffected. Nestele has been with the Rawalpindi Leprosy Hospital since 1977, having come up from the southern port city of Karachi where she first arrived in the late 60s. She led the way down another garden path, the small pathway curving across immaculately manicured lawns and past an elegant single-story structure that had a closed-for-business look to it. "That's the original building, built in 1904," she said. "It's been renovated many times which is why it still looks so good." The Rawalpindi Leprosy Hospital's primary donor is the German Leprosy Relief Association. World Leprosy Day has been celebrated every year since 1953, the year when Frenchman, Raoul Follereau, who had dedicated his existence to helping leprosy patients, decided to organise, what he called, an annual demonstration on a world scale - that would "constitute simultaneously a means of coming to the help of leprosy victims, a sort of universal mobilisation of hearts and minds in favour of those" whom he called the "saddest of the world's oppressed minorities".