KALPANA YADAV was forced to leave her home to protect her younger sister’s marriage prospects. If people had known that Kalpana had leprosy, no one would marry her sister.
Such is the stigma attached to the disease in India, where more than half of new cases of leprosy are diagnosed annually.
A new project, CREATE (Civil Society Organisations for Resource mobilisation, Empowerment, Advocacy, Training, and Employment), funded by a £925,000-grant from the European Union, hopes to tackle the stigma of leprosy and disability.
The three-year scheme, which is due to start this month, is designed to enlist Indian charities to work with local-government bodies to raise awareness both of the disease and the difficulties faced by those left permanently disabled.
The programmes officer for the Leprosy Mission in England and Wales, Gareth Shrubsole, is co- ordinating the project. “The myths and fears are so strong that often people will hide their symptoms from their own family. . . Sadly, if left untreated, it leads to deformities,” he said.
Leprosy, which most often occurs among extremely poor communities without access to clean water and sanitation, is curable with a course of antibiotics. But the stigma associated with the disease means that sufferers are frequently cast out from their villages and towns.
Untreated, the disease destroys all feeling in the fingers and toes; so victims of the disease are unaware when they burn or injure their hands and feet. The Leprosy Mission said that about three million people were currently disabled as a result of late treatment.
CREATE will target municipalities and employers in its campaign, focusing on ensuring good job prospects for those who have recovered from leprosy. Over the next three years, 3000 men and women will be given vocational training to find work, or to start their own small businesses. They will also be made aware of their rights.
In another strand of the scheme, academics from the University of Leeds will begin research into ways to tackle the stigma that attaches to leprosy.
Mr Shrubsole said: “This combination of rights awareness, vocational-skills training, and working with local governments and employers will help thousands of people to . . . build a better future for themselves and their children.”
Ms Yadav was among the lucky ones: she found refuge in a leprosy colony in the city of Allahabad, where she was given shelter and treatment. She was cured; but she has been left with a clawed hand and deformed feet. With the support of the Leprosy Mission, she now runs a stall selling bangles and tea from a wooden hut on the banks of the River Ganges.
“I still feel the pain of being forced to leave my home, like it was yesterday,” she said. “I think of my family every day. But life is good now.”
The Leprosy Mission was founded by an Irish missionary couple in 1874, after they had seen the devastation caused by the disease during their time in India. The charity now works in 30 countries where leprosy remains a scourge, offering specialist treatment, rehabilitation, and ongoing financial and education support to those suffering from the disease.
In 2014, the England and Wales arm of the charity sent £4 million to the projects it supports overseas. The World Health Organization estimates that there are about 213,000 new cases of leprosy diagnosed every year.