Named for Gerhard Armauer Hansen, the Norwegian doctor who discovered the bacteria in 1873, Hansen’s disease continues to infect people all over the world. In 2015, around 175 cases were reported in the US. In the worst cases, the bacterial infection damages the skin and nerves, leaving patients numb and susceptible to injury. Affected body parts sometimes become gangrenous and must be amputated, or are reabsorbed into the body.
The "separating sickness” was long thought to have no cure. Despite historic connotations of sexual impropriety, leprosy is usually spread via saliva or, more unusually, through contact with an armadillo. (There’s good evidence that what we call leprosy today may in fact not be the same condition described in ancient texts.) Some 95 percent of people are naturally immune, while those who contract the infection can be easily treated with a cocktail of inexpensive antibiotics. To this day, however, the intense stigma surrounding leprosy continues to prevent patients from seeking the straightforward care that can stop terrible disfigurement in its tracks.
In the decades before treatment was found, the U.S. government sought to isolate the bacteria through a policy of segregating patients. In 1917, about 50 years after the Kingdom of Hawaii first began sending patients to Kalaupapa, the government federalized the Louisiana Leper Home at Carville, in Louisiana, which had been run by Daughters of Charity nuns. The first patients from outside the state arrived in 1921.
Life in these communities could be intensely lonely, with few rights and no opportunity to leave. In Kalaupapa in particular, patients led a bittersweet existence. On the one hand, they were forced to live in isolation, far from their lives and families, below treacherous, insurmountable sea cliffs. Most died within a decade of arrival. But on the edge of the Pacific, against a backdrop of incredible natural beauty, many eked out a happy life, between softball games, church worship and even dances. Nearly 1,000 couples on the island married between 1900 and 1930, with some going on to have children. Tragically, babies were taken from their mothers and raised elsewhere.
At Carville, conditions during the earliest decades were rugged. When the facility was first established in swampy, malaria-prone territory outside Baton Rouge, the afflicted were initially housed in former slave cabins, where they shivered and sweltered through the seasons. Their lives were initially bound by fences—one that divided the men's side of the campus from the women's side (since interactions between the sexes were strictly forbidden) and a tall iron perimeter fence to thwart the many escape attempts. There was even an on-site jail to punish runaways, who were sometimes brought back in leg irons. And patients had to sacrifice their very identities: Upon arrival, they were immediately encouraged to take a new name to protect their families back home from the disease's powerful stigma.
A cure, and a slow move toward normalcy