KATHMANDU, NEPAL -- In front of Pashupathinath, the famous Hindu temple in Kathmandu, crowds of women in red saris gather to worship the Hindu god Shiva.
Outside the temple compound, tourists are busy clicking photos of the holy Bagmati River, ancient monuments, architecture, idols of various gods and the dead body of an elderly woman being cremated below. At the entrance gate, a dozen beggars sit in a row soliciting money from passersby.
Next door to the famous temple and tourist attraction, sits a small rented building leased to Rehabilitation Empowerment and Development Nepal, a nongovernment organization known as Read Nepal, established by and for people with leprosy.
Inside, Raj Kumar Shah, the founder, is pacing back and forth, with help of a crutch. He is watching as more than 20 leprosy patients anxiously wait to be interviewed.
But this is not just a job interview. The chosen ones will climb the world’s tallest mountain, Mt. Everest, in a daring attempt to bring greater international awareness to a disease that has all but disappeared in many regions of the world, but remains a plague here. In a small room, mountain climbing experts Neema Dawa Sherpa and Lakhpa Norbu Sherpa have interviewed nearly two-dozen men and women. In the end, just 10 are chosen.
Saraswati Neupane, 21, one of the only two women, is thrilled as the walks out of the interview room. She has been selected for the expedition.
“People in this society think that people suffering from leprosy are physically and mentally weak. I want to change this negative thinking,” she says.
No one with leprosy has ever climbed the world’s tallest peak.
Like Saraswati, all of the leprosy patients waiting to be interviewed, have skin sores, nerve damage, and white patches or skin lesions on their hands and legs.
Leprosy is an infectious disease that has been known since biblical times. Caused by the bacteria Mycobacteriumleprae, leprosy is difficult to transmit and so not very contagious. The World Health Organization, WHO, reports that 213,000 people, mainly in Asia and Africa, are currently infected. Though statistics are inconclusive as the onset of the disease can take between five and 20 years to show symptoms after infection. In Nepal, more than 150,000 people have been registered for treatment with the Ministry of Public Health.
The government of Nepal recently announced a tourism campaign for 2011, with the intent of bringing one million tourists to the small Himalayan country next year. Nepal has been plagued by civil war and political turmoil since the 1990s and the tourism industry has suffered. Piggybacking on the national tourism campaign, Read Nepal and Helping Hands USA organized the Mt. Everest expedition in order to create greater awareness for the plight of lepers here.
In all, ten leprosy patients—two female and eight male—aged 16-45 were selected for the mountain climbing training program.
According to Dawa, a veteran Everest climber, the trainees will be taken to Mt. Langtang, which is 5,896 meters high, for training. The top five participants will be selected to climb Mt. Everest.
“Climbing Everest is very tough, painful and life threatening job,” Dawa says. “But these brave victims of leprosy are here to climb the mountain and change the negative thinking about them in society.”
Saraswati came to Kathmandu last month from a small village in the Rupandehi district, some 220 miles from the capital city, to interview for the chance to climb Everest.
Only a few years ago, Saraswati says she developed white patches on one of her legs. Her mother poked and prodded, but the patches didn’t hurt so they ignored them. Then, one day some medical workers came to her school to talk about leprosy. When she heard them describe the symptoms of the disease, she knew she had it. She says she still believes that leprosy is a curse from god. “I felt like my life was destroyed. I thought, everyone will hate me. I did not tell anyone about my leprosy and I took my medication quietly, hiding it from everyone,” she says.
After taking the medication for 6 months, she told her mother. Then, a neighbor found out. She says she still worries about the discrimination and hatred she sees on people’s faces when they learn she has the disease. “It is impossible to make everyone understand leprosy, so I have to do this challenging job and climb Everest to spread the message that leprosy people are brave and strong like other people in this society,” she says. Her only physical symptoms today are black spots on her left leg and right hand.
According to the Ministry of Health here, there are 2,445 patients currently receiving treatment for leprosy. More than 153,000 patients have received treatment here over the last 20 years. Public health services provide free medication for leprosy patients, but little education and public health messaging has meant the discrimination and ignorance about the disease continue to flourish. “Social differentiating has not been removed” says Padam K.C., a leprosy patient. People here still believe that leprosy is a curse caused by a bad deed done in a previous life.
The Read Nepal expedition to Everest has already received widespread acclaim. Prime Minister Madhav Nepal says he knows that that people with leprosy are victims of discrimination. “After climbing the mountain they will be able to prove that they are also strong residents of the country,” Prime Minister Nepal says.
Shah, founder of Read Nepal, says he contracted the disease when he was 5 years old. Now 33, he says he has seen little change in attitude toward the disease in his lifetime.
The Mt. Everest expedition will be the highest profile event related to leprosy in the nation’s history. Nepali actor Arunima Lamsal has lent her name to help raise awareness for what she calls an “empowerment expedition.”
“We are asking for help from many other big and small organizations,” she says. “Everyone hated them and they were betrayed by their own loved ones and they ended up in streets and became homeless,” she says recalling her own fear of people with leprosy as a child.
Saraswati says her parents were against her training to climb Mt. Everest when she told them she had been selected. They told her there was a greater chance she would slip and die, but she says this is something she has to do.
“Everyone has to die one day, so why not do something great and challenging in life," Saraswati says.
