Bangladesh: Battling the stigma of leprosy

Bangladesh has made considerable advances in curbing leprosy, but for those who have the disease, tackling the associated stigma is more difficult.

For those living with leprosy, stigma and lack of awareness can be the biggest challenges

Leprosy can be easily treated with multi-drug therapy (MDT) if diagnosed early, and is endemic in 121 countries, including Bangladesh, according to World Health Organization (WHO).

“There were some red lesions on my body and I started suffering sensory loss in my right hand,” recalled 20-year-old Joli, who first noticed symptoms of the debilitating disease seven years ago.

Neither Joli nor the doctor in her village in Comilla District, Chittagong Division, knew much about leprosy, but by the time she arrived at the Leprosy Control Institute and Hospital in Dhaka this year, it was too late: She cannot move her right hand and has great difficulty walking.

“It’s difficult for me to lead a normal life now. Even walking and carrying out simple daily tasks is difficult,” Joli said. Neither her father nor her mother are alive.

But worse than the diagnosis itself was the reaction of her family when they learned she had leprosy.

Also known as Hansen’s disease, after the doctor who discovered the bacterium that causes it, it is not very contagious, say health experts, but misperceptions are widespread.

“Neither my brother nor sister want anything to do with me. I don’t know how I will lead the rest of my life,” she said. “I feel alone.”

“There is still social stigma about leprosy in society. Many people have inaccurate knowledge about the disease. As a result, many patients do not come for treatment in the early stages,” Martin Adhikary, director of Leprosy Mission International - Bangladesh told IRIN, adding that he routinely comes across instances of discrimination.

“In some cases, their relatives and neighbours do not want any contact with them and they become isolated,” he said.

So heavy is the stigma burden that Abdul Hamid Salim, country director of the Damien Foundation, a Brussels-based NGO working to fight leprosy, believes many cases go undiagnosed.

“In Bangladesh the social stigma is prevalent among even educated sections of the community,” he said, adding that many feel a sense of shame, of being “unclean” upon learning they are infected - prompting many from deferring treatment early on.

One case in point is Sufia Begum, who first experienced symptoms in her hand six years ago but never sought treatment until recently.

“A village doctor told my sons and my family members that they should not touch me. They said I should be isolated,” Sufia told IRIN.

Progress

According to the National Leprosy Elimination Programme, Bangladesh (NLEP), 5,249 new leprosy cases were reported in 2008, a figure expected to remain roughly the same in 2009.

But big progress has been made in recent years thanks partly to mass public awareness campaigns.

In 1985, leprosy prevalence among registered patients was 10.79 per 10,000 people, but by December 2008 that number had dropped to 0.87. WHO says anything below one per 10,000 means the disease has been all but eliminated and no longer represents a major public health concern.

“Social stigma associated with leprosy is still prevalent in society in Bangladesh. But the Health Ministry through NLEP and NGOs is trying to motivate people,” said Shaikh Abdul Hadi, NLEP’s deputy programme manager.

As part of those efforts, NLEP is working closely with religious leaders, village doctors, as well as local and government representatives to get the message out, while in 2009, 15 skin camps set up in various parts of the country successfully diagnosed 79 new cases.

According to WHO, worldwide there were 249,007 new cases of leprosy in 2008, the vast majority in India, followed by Brazil, Indonesia, the Democratic Republic of Congo, Bangladesh, Nigeria and Nepal.

Since 2002, more than 50,000 cases have been reported in Bangladesh.

Disclaimer:This material comes to you via IRIN, the humanitarian news and analysis service of the UN Office for the Coordination of Humanitarian Affairs. The opinions expressed do not necessarily reflect those of the United Nations or its Member States.
Photo: Courtesy of the National Leprosy Elimination Programme, Bangladesh

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