The leper who has the disease shall wear torn clothes and let the hair of his head hang loose, and he shall cover his upper lip and cry, 'Unclean, unclean'. He shall remain unclean as long as he has the disease; he is unclean; he shall dwell alone in a habitation outside the camp. - Leviticus 13: 45-56
Throughout history, leprosy has been feared and misunderstood, and has resulted in significant stigma and isolation of those who are afflicted. Until recently, it was thought to be a hereditary disease, a curse, or punishment from the gods.
During the Middle Ages, those with leprosy had to wear special clothing and ring bells to warn others as they walked by. For millennia people with leprosy were ostracised and forced to live in leper colonies. Famously, from 1846 to 1931 Robben Island was used for just this purpose.
In 1873 Dr Armauer Hansen of Norway discovered the germ under a microscope and announced that leprosy was caused by bacteria – hence the name Hansen's disease. This was an astounding finding, because up until then, people with leprosy were though to be "cursed", "unclean" and "sinners".
Not very contagious
In the 1940s, medication had been developed that allowed sufferers to return to society. And in 1960, leprosy was internationally recognised as an illness resulting from the transmission of an extremely rare virus, which is not very contagious at all.
Interestingly enough, Japan only adjusted their Leprosy Prevention Law in 1996. This law forced patients into sanatoriums, where they were given limited freedom, were sterilised and in some cases even forced to have abortions. This law has been repealed since, and the Japanese government has formally apologised to the leprosy community.
Today we know that 95% of people are naturally immune to leprosy and the remaining 5% who are susceptible to the disease would have to have a prolonged exposure to the bacteria to actually become infected. We know that once a person with leprosy starts the antibiotic treatment, they can no longer transmit the disease. We know that people with leprosy are not unclean and that the stigma from the past was born out of fear and ignorance. Right?
Wrong. The stigma surrounding leprosy is not gone and the continuing discrimination against people with leprosy is to blame for the disease not being eradicated despite the fact that it is completely treatable.
According to a BBC News report, Tim Lewis, a doctor working in Nepal for Leprosy Mission International, believes that fear of discrimination is preventing people from seeking treatment at an early stage. "We are still seeing some patients coming at quite an advanced stage of disease and the main reason why people delay treatment is still fear of rejection."
The South African government admits that stigma of the disease also occurs in South African communities: "People are still being shamed, abandoned, rejected and hated simply because their families and communities do not understand the disease. Many people still believe leprosy is a curse or punishment from the gods," reads the Government Information website.
Theo de Villiers, deputy director of the Leprosy Mission for Southern Africa, says that despite strong public education efforts on the disease, they still come across incidents where people discriminate against someone with leprosy. "In such instances the Mission makes contact with the family or employer [who discriminates] and give them the real facts about the disease."
According to De Villiers a combination of superstition, ignorance and fear is usually behind incidents of discrimination. "Discrimination that stems from religious belief is deep rooted - the Old Testament often refers to people with leprosy as 'unclean'. In such cases we spend some time with the person or family and explain to them that leprosy is a disease like any other."
Leprosy Mission Southern Africa
The role of the Leprosy Mission is to teach communities about leprosy and to help patients and their families overcome physical, social, emotional and spiritual obstacles brought on by the disease.
For more information visit Leprosy Mission Southern Africa
(Wilma Stassen, Health24, January 2009)
- National Institute of Health
- Corporate Watch in Japanese
- South African Government Information (www.info.gov.za)
- BBC News
Leprosy still with us