Stigma hinders efforts to combat leprosy in India
By Nirmala George, AP
March 10, 2014, 12:10 am TWN
TAHIRPUR, India--At first, Ashok Yadav ignored the patches of pink skin on his arm. But when pale sores erupted on his body and he lost sensation in his fingertips, a doctor issued the devastating diagnosis: Yadav had leprosy.
"What followed was like a nightmare," said Yadav, who has lived in Kasturba Gram, a leper colony outside New Delhi, since his diagnosis 30 years ago. "I lost my job. My parents felt I would spoil my sisters' chances of getting married. My family felt it would be better if I left home."
The stigma of leprosy endures in India, even though the country has made great strides against the disease, which is neither highly contagious nor fatal. Now the number of new annual cases has risen slightly after years of steady decline, and medical experts say the enormous fear surrounding leprosy is hindering efforts to finally eliminate it.
People continue to hide their diagnoses from families and loved ones out of fear they will be ostracized. Employers regularly turn away people who have had the disease, even if they've been treated and cured. Many struggle to get driver's licenses and other routine documents. Even the disease-free children of leprosy patients are shunned.
"We face a thousand indignities every day," said Neelawati Devi, a longtime resident of Kasturba Gram. Some 10,000 people live there, including the children of leprosy patients.
"Our children face taunts and slights when they go to school," said Devi, holding out her hands, the stubs of her fingers wrapped in gauze bandages. "But we want them to get an education and get jobs. Their future should not be ruined."
Public health centers across the country have launched campaigns describing leprosy as the world's "least contagious communicable disease." Health workers are trying to spread the word that leprosy is not hereditary and does not spread through normal contact.
War Not Yet Won
But the deformities that are the hallmark of leprosy contribute to the fear surrounding the disease, a chronic bacterial infection that often lies dormant for years before attacking the body's nerves and slowly causing numbness. Hands and feet eventually claw inward and serious injuries often go unnoticed because no pain is felt. Often fingers and toes are lost due to injuries and sores. Scientists believe it is spread through droplets from coughing or sneezing during prolonged contact with someone infected, but they are still not completely sure.
Also called Hansen's disease, leprosy has been curable since the 1940s thanks to antibiotics, and the worst physical deformities can be avoided if it is caught in time. About 95 percent of people have a natural immunity.
Worldwide, the number of new leprosy patients dropped from around 10 million in 1991 to around 230,000 last year as countries intensified efforts to fight the disease. In India, hospitals and clinics began treating patients with a combination of drugs that effectively kills mycobacterium leprae, the germ that causes leprosy.
In 2005, India declared victory, with health authorities reporting less than one case for every 10,000 people. But pockets of the country continue to have problems with leprosy, including in the central state of Chattisgarh, Maharashtra in western India and Bihar and West Bengal in the east.