The Second Life of Mirielle West

Hansen’s disease, commonly known as leprosy, is a condition caused by bacteria that causes nerve damage. The bacteria develops slowly, and therefore can take as many as 20 years after infection before any symptoms appear. The bacteria works by attacking the nerves just under the skin, causing the infected skin to change in color. Because the disease attacks the nerves, one infected with Hansen’s disease may lose feeling and be unable to feel pain, making injuries such as cuts and burns more dangerous. Without treatment, Hansen’s disease can be serious, potentially leading to blindness or impacting the limbs by causing the body to reabsorb fingers or toes. Fortunately, if diagnosed early, Hansen’s disease is treatable with antibiotics. Damage done to the nerves or body parts prior to diagnosis, however, cannot be reversed, and thus early detection is important.

Hansen’s disease is believed to have originated in 1200 CE in present-day India. Mentions of leprosy are present in the Bible (though it is believed to be referencing a different condition entirely), and evidence of leprosy hospitals existed throughout medieval Europe. Hansen’s disease appeared in the United States in the late 19th century, with isolation colonies on the island of Molokai in present-day Hawaii and in Carville, Louisiana, where the novel takes place. Today, many people mistakenly believe leprosy has been eradicated. (“The history of leprosy,” The Leprosy Mission International). Hansen’s disease is rare in the United States and in many other countries, as “[a]round 95 percent of people cannot be infected because their immune system can fight off the bacteria that causes Hansen's disease” (How Hansen's Disease Spreads. Centers for Disease Control, 2024).

Historically, patients infected with leprosy have faced harsh stigma and have been ostracized from society. The condition was thought to be highly contagious and quarantining those infected was a common practice world-wide. Because of the disease’s physical effects, it was often difficult to keep the condition a secret. Patients were forced to reside in “leper colonies” (like Carville) where they were typically stripped of their rights and civil liberties; patients were denied the right to vote, to move and travel freely, to seek paid work outside of the colony, and often stripped of their parental rights. By the 1940s, scientific advancement had made clear that these efforts were unnecessary, yet the reversal of the stereotypes and stigma took decades. As late as the 1990s, patients opted to remain at Carville and other colonies, finding the isolation there more tolerable than the stigma and hatred from the general population (“Quarantined for Life: The Tragic History of U.S. Leprosy Colonies.” American Leprosy Missions, 2020).