MAWLAMYINE, Mon State — Mi Na Me sits cross-legged outside the front door to her home, smoke rising from a green cheroot as she begins to recall the childhood experience that still haunts her.
For three years, Mi Na Me was forced to live alone in the jungle; sent there by an uncle who had feared the dark spots that had begun to appear on the nine-year-old.
“From time to time some people gave me food and something to drink,” the slender 42-year-old woman recalls. Few had dared get too close, concerned that they too may catch the unknown affliction.
Back then, there was scant knowledge of Mycobacterium leprae, the bacterium that causes leprosy, among the residents of her small village in central Myanmar.
Today, Mi Na Me is no longer forced to live a lonely, secretive life in a makeshift jungle shelter. “I felt relieved when I arrived here,” she says of her humble brick home, located behind Mawlamyine Christian Leprosy Hospital.
The hospital has existed for more than 100 years in the bustling Mon State capital on the banks of the Thanlwin River. It was established in 1891 at the initiative of Susan Haswell, the daughter of an American Baptist missionary doctor, with the financial support of Wesley Bailey, founder of international Christian charity The Leprosy Mission.
The hospital was one of the first in Myanmar specializing in the treatment of leprosy patients. Today, around 50 brick or bamboo houses for patients and their families are located on the property that has expanded from a small settlement to cater for a growing number of patients.
Many have stories similar to that of Mi Na Me. Like her, they have had to contend with being rejected by friends and relatives and forced to leave their home villages.
“The stigma of leprosy is still high in Myanmar,” says the hospital’s superintendent Dr. Chan Lwin.
An Ongoing Battle
By the 1950s, Myanmar had one of the highest rates of leprosy worldwide, according to the International Federation of Anti-Leprosy Associations (ILEP). An estimated 209,706 people were registered with the disease by 1969, ILEP said.
The World Health Organization (WHO)’s introduction of multidrug therapy (MDT) treatment in Myanmar in the mid-1980s heralded a major advance in the treatment of the disease.
In 2003 Myanmar’s Ministry of Health declared leprosy eliminated, which, according to WHO requirements, meant that less than one in 10,000 people suffered from the disease. The country’s program for the early detection of leprosy was shut down in 2005, according to head nurse Mi Nini Thein, and the focus of international aid agencies turned to other diseases such as HIV, tuberculosis and malaria.
However, Myanmar still reports some 3,000 new leprosy cases annually and the capacity to detect cases in remote or conflict-affected regions remains problematic.
“The number of patients did actually decrease, but since 2011 the [number has] risen again,” says Mi Nini Thein who has worked at the hospital in Mawlamyine for 31 years. According to hospital data, 70 new patients were admitted last year.
The Daily Rounds
When Nai Ju Khin Eyen first saw the local doctor some two decades ago after he began to lose feeling in his hands and feet, he was turned away virtually untreated.
“I got painkillers and was sent back to the village,” he explains in a low voice from the steel framed bed he occupies in Mawlamyine Christian Leprosy Hospital. His fingers are only stumps and he has lost all sense of feeling in his feet. But now the 56-year-old is receiving proper treatment for the first time in his life.
Although the disease is curable, its debilitating and life-long physical effects are a stark reminder of its severity. According to WHO, hallmarks of leprosy include skin lesions, nerve damage causing paralysis or deformities and, in some cases, visual impairment or blindness.
At present, there are around 60 patients at the Mawlamyine facility, which usually hosts a larger number during the rainy season when the mobility of leprosy sufferers is even more hampered.
The daily hospital rounds involve bandages being changed, wounds cleaned, ulcers treated and the general health of patients checked. On benches, in wheelchairs or perched on small rolling stools, patients wait outside the treatment room for their turn.
Four nurses and six assistant nurses are responsible for the daily treatments. Five doctors—one part-time—plus 11 physiotherapy staff complete the small team.
During the week, leprosy sufferers from the area also visit the hospital to receive their monthly ration of medication. Mi Hla Win Yig, who has traveled two hours from Taung Bauk in Kayin State’s Kyainseikgyi Township to Mawlamyine, holds a plastic bag filled with packaged pills. She takes 11 tablets daily which help alleviate the pain and strengthen her immune system.
The 29-year-old mother of two was lucky. In the early stages of the disease, a friend suspected that the loss of feeling she was experiencing in her legs and the dark spots on her arms could be leprosy, and sent her to a specialist in Mawlamyine.
Unlike the experience of many others, Mi Hla Win Yig was not rejected by her family and friends when the diagnosis came through. She has continued to earn a livelihood with the help of her husband, who accompanies her on monthly hospital trips, on their own small rubber plantation.
Recovery and Reintegration
The effective reintegration of leprosy sufferers into their communities is still very much a work in progress. In the north of the country, NGO-run programs, such as those led by The Leprosy Mission, support reintegration but little assistance exists in southern areas such as Mon State.
Until a few years ago, Mawlamyine Christian Leprosy Hospital staff also assisted with patient rehabilitation and reintegration. “Unfortunately we had to cancel this commitment for financial and organizational reasons,” says Mi Nini Thein. But the hope remains, she says, that The Leprosy Mission will also set up a program in Myanmar’s south.
Another option is one the doctors at Mawlamyine prefer to avoid: When patients are no longer accepted at home and have no place to go they may live in what may rather crudely be termed a leper colony.
One such place is the Mayanchaung Welfare Centre, located around 50 miles north of Yangon, where patients receive shelter and financial donations for food. But the infrastructure is minimal and they may not leave the site.
Nai Maung Thein is another former patient who now lives permanently on the Mawlamyine hospital site. He left Taung Bauk 25 years ago, feeling ostracized from his community.
“I would never move back to my old village,” says Nai Maung Thein, 52, who hails from the same community as the young mother Mi Hla Win Yig. Today, people are more aware and accepting of the disease, he says, and he has even made one or two visits back to Taung Bauk.
But Mawlamyine is now his home.
Together with his wife and fellow leprosy sufferer Mi Na Me—with whom he has six children—Nai Maung Thein, a carpenter by trade, built the brick house his family calls home. Physical traces of the disease are not immediately apparent on his muscular body; the type of bacterium that affected him did not attack his nervous system.
“One of the main reasons infection with the leprosy bacterium [occurs] is the weakening of the immune system due to a low standard of living,” explains head nurse Mi Nini Thein. Those vulnerable to the disease may be villagers living in remote regions of the country where clean drinking water, for example, may be difficult to access.
What makes the fight against leprosy particularly difficult, says Dr. Chan Lwin, is ongoing ignorance over possible symptoms—a knowledge deficiency that concerns not only citizens but also some medical personnel in the country.
Mi Nini Thein is adamant that knowledge and best treatment practices need to be revamped. Once again, “the national procedures for dealing with leprosy must be changed,” she says.
This article originally appeared in the July 2015 issue of The Irrawaddy magazine.
