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Old 24-04-19, 18:53   #1
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Asia Nepal's Hidden Leprosy

'The Harder You Look The More You Find' : Nepal's Hidden Leprosy

Almost two decades ago the World Health Organization declared leprosy eliminated, but millions of cases go undiagnosed

The Guardian UK, 24 APR 2019.

Disability can be prevented if leprosy is caught and treated early. Because Paniya Sardar’s leprosy was diagnosed late, she suffered irreversible nerve damage in her hands and feet. Photograph: Sailendra Kharel/The Guardian

One summer’s morning Paniya Sardar noticed a strange mark on her leg. It was the size of her palm, light in colour and felt numb to touch. She had no idea what had caused it.

The family took Paniya, then 14, to a private clinic near their home on the outskirts of Biratnagar, a city in southern Nepal, where they were sold lotions and pills and told not to worry. Three months later, a deep wound appeared on her foot. “This particular blister was pretty big and wouldn’t heal,” her father, Sita Sardar, says through an interpreter. Six months later, it was still there.

Paniya was eventually diagnosed at a local hospital with leprosy, one of the oldest recorded diseases. “[Doctors] were speaking very hard words and talking loudly,” she remembers. “[I] thought, ‘Why has this happened to me?’”

The World Health Organization declared that leprosy had been eliminated as a public health problem globally in 2000, after a fall in international prevalence rates. Nine years later, Nepal’s government reported it had reached targets to eliminate the disease as a public health problem nationally. But critics say such claims were misleading. They insist these claims led to the defunding of leprosy research and caused health departments to wind down services designed to spot patients such as Paniya.

Paniya Sardar, 17, had surgery to regain the full use of her left hand after contracting leprosy at the age of 14. She will soon start physiotherapy to re-teach her brain how to control her fingers. Photograph: Sailendra Kharel/The Guardian

It’s feared that thousands of cases are going undiagnosed across Nepal – and that millions are missing from statistics globally.

“People have misunderstood, [and believe] that somehow the disease was eliminated when in fact new cases are still occurring,” says Professor W Cairns Smith, emeritus professor of public health at the University of Aberdeen.

“The harder you look the more you find,” he says. “We’re not really looking hard enough.”

Leprosy, caused by bacteria called Mycobacterium leprae, is curable, and disability can be prevented with early treatment. But the disease is poorly understood and signs are often missed. Despite its reputation as a very contagious disease, 95% of the world’s population are immune.

It’s not known why certain people are more vulnerable than others, and the mode of transmission – it’s thought to be passed on through nasal droplets – is still not fully understood. The tools for diagnosing leprosy are also limited. A skin smear can be taken from behind a patient’s ear, but this doesn’t identify all types of leprosy.

Doctors and nurses instead rely on symptoms such as skin lesions to make a diagnosis, but these can be mistaken for other conditions, says Dr Mahesh Shah, senior consultant dermatologist at Patan clinic, run by the Leprosy Mission, in Lalitpur.

“Depending on the leprosy, it takes a long [time] to have proper clinical signs and symptoms. It may be five years, 10 years. From the patient side also it is difficult to recognise the problem.”

By the time Paniya was correctly diagnosed with leprosy, she had experienced irreversible nerve damage that left her hands with little sensation. This eventually caused her hands to claw – a common symptom of leprosy that not only means she has limited use of her hand, but also that the disease is almost impossible to hide.

Paniya’s experience is the kind of case that the WHO wants to prevent. It calls for patients to be identified earlier, and set a target for zero disabilities among new paediatric patients by 2020. This target is partly aspirational, says Smith: “It focuses the mind to say: this is not acceptable.”

In Nepal, the Leprosy Mission carries out preventative work among communities at risk. “If someone is diagnosed we go and screen family members, even the neighbours,” says Shovakhar Kandel, the charity’s country leader for Nepal.

Some families, such as Paniya’s, are also being offered a post-exposure treatment that can prevent them from developing leprosy. The therapy – known as leprosy post-exposure prophylaxis – is the first major breakthrough in leprosy since multi-drug therapy was introduced as a treatment in the 1980s.

Research suggests it is 50-60% effective in preventing the development of the disease over the following two years. But its success depends on health departments funding specialist workers to track families, work that ground to a halt in many countries after the global elimination target was reached in 2000 – when the prevalence rate was reported to have fallen to less than one case per 10,000 people.

Today, Paniya, now 17, is sitting in a physiotherapy room of Anandaban hospital, a specialist facility near to Kathmandu, her arm cased in thick plaster of paris.

She has just undergone life-altering surgery to regain the full use of her arm
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