The US Center for Disease Control Recognizes Today as World Leprosy Day!
To most of us Leprosy sounds like a grim disease of the distant past; something untouchables might have been riddled with in biblical times. One of those things is true: Left untreated it is a very grim disease.
But it’s not what you’d expect.
Leprosy has been around for approximately 100,000 years, and it still exists. According to the WHO thousands of people still develop the disease each year. In 2015 there were 200,000 new cases; 178 were in the United States. Leprosy (also called Hansen’s Disease) is caused by a slow-growing bacteria called Mycobacterium leprae. Years may pass before a victim shows symptoms, and until 1948 there was no effective treatment. In 1981 combining treatment with chemotherapy was able to halt the disease in its tracks.
“The fear associated with leprosy-affected people was as debilitating as the disease itself.”
You’re likely already familiar with the stigma. Leprosy, when left untreated, is not fatal – but it has grossly debilitating effects. The bacterial infection causes nerve damage which makes it easy for leprosy-affected people to injure their hands and feet. Once the nerves of fingers and toes become numb, injuries can go unnoticed. Unnoticed wounds can lead to infection and permanent damage. In advanced stages of untreated leprosy the body may reabsorb the digit.
Little was known about the nature or cause of this disease until the 20th century. The bacteria was only discovered in 1873. By the late 19th century informed British medical opinion believed that Leprosy was not highly contagious (this is true!), but the sometimes gruesome effects and lack of effective treatment meant the fear associated with leprosy-affected people was as debilitating as the disease itself. When someone was found to show symptoms they were made to leave their homes, often by force. Once extradited from their community they would be unable to find refuge or work, and forced to live a life of isolation while also coping with their disease.
“There are 2 to 3 million people alive today who are living with leprosy-related disabilities.”
Today, leprosy can be cured with an antibiotic. Contrary to popular belief it is not highly contagious: In fact, only 5% of adults can contract it at all. The rest of us have immune systems strong enough to protect us. In the early 20th century it was considered a “child’s disease” for this reason; it seemed that past a certain age people were unable to contract it. In the US treatment is easily accessed, but in resource-poor countries the expense or distance to healthcare services can be prohibitive.
There are 2 to 3 million people alive today who are living with leprosy-related disabilities. 40 of them live in the village we are working with in Purulia District, West Bengal. (We’ll be writing soon on the village’s own intriguing history.) Most of this village’s residents have lived there since they were 17 or 18 years old. Today they are all cured,.but most have suffered loss of digits or limbs. Now 60 to 80 years old, residents are living with their disabilities in facilities that have been neglected by the government since the 1990’s. The CDC aims to promote a more positive image about the disease. We will soon be contributing with stories about the lives of these #ForgottenPeople. They have all faced challenges, but it’s not all a sob story. Their culture is rich, their perspective unique, and their experience entirely human.
You can learn more about our work at the Leprosy Village in Purulia here.