Former leprosy sufferers testified today at a Vatican conference about the stigma linked to the disease which still persists in some societies, and about their attempts to fight exclusion.
Although it has been eradicated almost globally through treatments developed in the 1980s, leprosy still affects 200,000 people a year, particularly in India, Indonesia and Brazil.
And the stigma attached goes on long after sufferers have been cured.
“At 14, I was diagnosed with leprosy. My parents loved me and to prevent me from being hurt or burned by others, they locked me in a small house,” said Yuan Yahua, born into a poor farming family in China.
Vagavathali Narsappa, an Indian who leads an association for former sufferers, was driven out by his parents, and he only reunited with his sister when she learned he and his children were healthy.
Japanese Natsuko Tominaga, 80, stayed at a leper colony for 60 years despite being cured aged 18, so he could support fellow sufferers, who he considered family.
More than 200 people, including victims of the disease and researchers, took part in the congress yesterday and today.
“Exclusion still exists,” the chief executive of the Follereau Foundation Michel Recipon told AFP, adding that testimonies from sufferers was invaluable in changing perceptions in areas of the world still fearful of leprosy.
“When they are no longer afraid, they begin to defend themselves” and fellow victims. “They are the ones who began forming associations and telling us ‘this is what should be done’,” he said.
Some 20,000 sick or disabled people, including the leprosy sufferers, flocked to Rome today for a series of Vatican events which wind up Sunday with a mass lead by Pope Francis in Saint Peter’s Square.