For centuries, people with leprosy were cast out of society, called sinners, and treated like, well, lepers. There's a reason that today, the word is synonymous with stigma. But the truth about leprosy is much more complicated. Yes, the disease causes horrible disfiguration, including blindness, facial deformity, and the reabsorption of limbs back into the body. But for centuries, lepers have been accused of atrocities like poisoning wells or causing the Black Death.
Just like black plague victims were sent to die on an isolated island, people with leprosy were sometimes forcibly removed from their families and quarantined to remote colonies. But there's a wide gap between leprosy facts and myths. For example, Europeans believed for centuries leprosy was incredibly contagious. But, in fact, the disease is not very contagious at all—it takes long-term, close contact to spread between people.
Today there's a cure for leprosy, also known as Hansen's disease. Scientists identified the bacteria that causes the disease in the 1870s and discovered in the 1940s leprosy can be cured with antibiotics. But even though leprosy no longer sentences people to a horrible, painful death, the stigma of the disease remains.
As leprosy spreads through the body, it causes an enormous amount of damage. Leprosy attacks the nerves, which causes swelling. The earliest sign of leprosy is changes to the dermis in both appearance and in reduced sensitivity. The infection can cause dry and flaky skin that looks noticeably lighter or darker, and it can also lead to redness and inflammation.
Without treatment, people with leprosy become paralyzed in their hands and feet. The body can even reabsorb toes and fingers over time. Lepers also experience blindness and may develop facial deformities.
Medieval Europeans were terrified of lepers. Many believed the disease was a curse or a punishment from God. In parts of Europe, lepers had to wear special clothes to identify themselves. They also had to carry a bell or clapper. When lepers wandered the streets begging for alms, they rang the bell or slapped the clapper so people knew they were coming.
Lepers were social outcasts, feared and reviled because of their disease. In part, it was the visible evidence of leprosy that made it so fear-inducing. Victims suffered from disfigurement in their face, hands, and feet. Their muscles became paralyzed. They sometimes lost the use of their vocal chords or became blind. The horrific progression of the disease drove panic around the possibility of contagion.
In Hawaii, the Kalaupapa leper colony has housed patients since the 1860s. As of 2015, the isolated colony on the island of Molokai still had six patients. Known as the "land of the living dead," the leper colony took in Hawaiians diagnosed with the disease for decades. Starting in the mid-1800s, at least 8,000 people were exiled to the leper colony.
A quarantine order kept the patients away from the public in the isolated colony for over a century. In 1969, the quarantine was lifted, and today Kalaupapa is a National Historic Park. Even now, no roads go to the leper colony. It's only accessible by boat or small plane.
When Stanley Stein was diagnosed with leprosy in 1931, he reacted with horror: "Leprosy! The word was not a diagnosis; it was a pronouncement of doom." Even in the 20th century, the disease still carried an enormously negative connotation. "Leprosy was not just a disease—it was a stigma, a disgrace, a visitation from on high, a punishment for some dreadful sin. What had I done to bring down the wrath of God upon my head?" Stein wondered.
For many years, Europeans associated leprosy with sin. The disease was sent from God, many believed, to punish sinful people. For that reason, lepers were scorned not just for fear of contamination, but also because people assumed they were evil.