My first introduction to leprosy was through a Miyazaki film, Princess Mononoke, which I got on VHS in middle school and wore out through successive watchings. In the film, a town on the edge of the forest is a sanctuary for those otherwise ostracized by society. Among them, a group of lepers are employed to manufacture arms and other equipment for the town where otherwise they would be left to die.
The first few times I watched it, I didn’t understand why these people were covered in bandages, or why others hated them. It wasn’t until much later that I discovered the tragic history that inspired their story.
What is leprosy?
Leprosy is an infectious, bacterial disease that is related to the bacteria the causes TB. Unlike TB, which inspired fashion trends in the 1800s, leprosy is know throughout history for causing revulsion.
Like tuberculosis, it is spread via respiratory droplets and close contact with those infected. Once infect, the disease can take between one and twenty years to become symptomatic, making it one of the slowest known infectious diseases on the plant. Famously, it causes skin lesions, but it can also infect the eyes, mucus membranes, and nerves. These infected areas then swell and discolor. The swollen nerves lose functionality and if not treated can lead to permanent paralysis, blindness, or other disabilities. Look up images of the damage it can cause at your own risk; ulcers and secondary injuries are very common as the extremities lose feeling, and in very advanced cases the body can actually begin to reabsorb fingers and toes that have become damaged.
In 95% of exposure cases, a healthy immune system can defeat the bacteria and infection never occurs. However, a compromised or weakened immune system can’t fight it off.
Luckily, leprosy is not as infectious as our forebears once thought. It’s actually quite different to pass it from person to person, but the fear of the disease was deeply imbedded in society, causing a stigma that lasts to this day. Considering it’s a disease that has been with us at least 4,000 years, “deeply imbedded” might be a bit of an understatement.
Historically, a leprosy diagnosis was applied to any kind of stubborn skin infections, including syphilis, scabies, and eczema, meaning that it didn’t become a clear and distinct diagnosis until 1873, when it became the first disease causing bacteria to be isolated by scientists. For this reason, when discussing historical cases I will be using the word “leprosy”, as it can cover a variety of diseases that were all treated the same (In the contemporary context, I will use the current medical name, Hanson’s Disease).
All of these skin disorders would be treated with harsh and ineffective treatments, the most common being mercury and isolation. In some cases, those diagnosed with the disease ceased to legally exist; their property would be stripped and their family would treat them as though they had died. Marriages were annulled and patients evicted and exiled. In a few areas, the policy would be to exile the entire household to prevent infection outside of the home.
Those who had the disease were viewed as “unclean,” both physically and spiritually. Forced to live in sanatoriums, specially designed hospitals, or other isolated places, in many parts of Europe they were forced to wear special clothing and a bell to identify them in public, so civilians could avoid contact. This practice dates to the 1100s.
Perhaps due to this strict isolation policy, the disease was less previlent by the 1800s, though it did still exist. However, this century saw some of the first infection and disease tracking and surveys, as well as the aforementioned isolation of the bacteria. Germ theory and an emphasis on cleanliness from the late 1800s to the early 1900s also may have impacted the decline.
This wasn’t universal, however, and in one country cases were on the rise: Japan.
Japan is an extremely homogenized society, with little racial diversity. With a cultural emphasis on obedience to one’s elders or superiors, a common saying is “the nail that stands out gets hammered down.” Physical differences are often looked down on, even today. Everything from disabilities to the color of your hair or the length of your skirt can be a reason for the “good people” of society to avoid someone, and in the early 1900s this feeling was turned on the tens of thousands of people suffering from leprosy in the country.
By a government order in 1907 and follow up legislation following WWI, patients, especially the poor and homeless, were forcibly removed to one of five national sanatoriums were they were not to have contact with the outside world. These laws also gave employees the right to discipline inmates, and the hospitals quickly took on a prison-like atmosphere. By 1931 these Leprosy Prevention Laws had been expanded again to include not just vagrants, but anyone with the disease. Over 30,000 people were locked up in Japan’s quest to become a “first class nation” that could compete with the west.
But the real cruelty came in 1948, when a series of eugenics laws allowed for the sterilization of patients and the termination of pregnancies without the patient’s consent. Worse, these polices were similar to other laws found throughout the the world, including German, Spain, and the US. Perhaps the most famous leper colony in the US was on Molokai, in Hawaii. While I don’t want to go into depth on it here, I have included several links in the “further reading” section if you would like to find out more.
Today leprosy is known as Hanson’s disease, and can be treated through multi-drug therapy. The first effective treatments were developed just after WWII, however the disease soon acquired resistance to the antibiotics and MDT is now the recommended course of therapy. Delaying treatment, however, can still lead to permanent damage even if the disease is cured.
Our knowledge of Hanson’s disease has expanded so much in the past 150 years, but those diagnosed before the 1970s still face stigma. The ’70s was the period when treatment transitioned from inpatient, in isolated sanatoriums, to outpatient, allowing people to be treated in their own homes, with their families. In Japan, for example there are still roughly 1300 patients in sanatoriums, most of them either incapable of caring for themselves due to their advanced age or the disease and the damage it caused, or unwelcome to return home as their families still fear infection. While the colony at Molokai officially closed in 1975, most patients could not return to their families and many were told to stay away. By comparison, in Japan about 3,000 people were treated as outpatients, continuing to go about their daily lives.
So would it kill you? Even in the 1800s, the answer is…probably not. However, because Hanson’s is more common in people who already have weakened immune systems, and frequently leads to injuries (which can lead to secondary infections), you would probably have a reduced life expectancy for that reason as things like influenza swept through the community.
WHO page on leprosy
CDC page on Hanson’s disease
This Podcast Will Kill You (Ep 2)
History of Leprosy in Japan
The Unsettling History of Leprosy in Japan
Wikipedia: Leprosy in Japan
Hawaiian Leprosy Patients
Ask a Mortician: Molokai