The Story of Leprosy and the National Hansen's Disease Museum
Discover the amazing stories of a centuries old disease, its social implications and the years of research resulting in a miraculous treatment.
Like so many rural communities along the Mississippi River Road, Carville is a small town lost in the farmlands defining its boundaries. It’s here—in this overlooked, unassuming location—that hundreds of the nation’s leprosy patients were banished from society, sent to live in the shadow of their disease while praying for a cure.
They were armed with a team of doctors, determined to beat the odds and discover the antidote for what is now called Hansen’s disease. Left untreated, the bacillus that causes leprosy leads to peripheral nerve damage that can cripple hands and feet and even blind its victims. Although 95 percent of the population is unable to catch the disease, it’s always been enveloped in a climate of fear.
The unimaginable story of the hardships and the incredible fight to conquer both the disease and the stigmas associated with it is brought to life at the National Hansen’s Disease Museum. Housed in the Carville Historic District, the museum sits in the center of a Louisiana National Guard base. Although access to the grounds is restricted, the curator has developed an audio driving tour that leads drivers to the cemetery where many patients were laid to rest. Hansen’s disease is an out-patient diagnosis today, but for most of a century, patients lived out their lives, and were buried, here.
The tale begins in 1857, when sugarcane planter Robert Camp built Indian Camp Plantation on the site of a former Houma Indian hunting and fishing ground. The mansion’s beauty rivaled that of the finest plantation homes, but over time, changing economics left the property abandoned and the house and outbuildings fell into ruins.
It was in this state when the land was leased as a temporary shelter for seven leprosy patients from New Orleans. Publicly shunned after a Daily Picayune reporter revealed their existence, the sick were in need of a new home and a series of circumstances landed them in Carville. They traveled upriver on a barge under the cloak of night and disembarked at Indian Camp on the morning of Dec. 1, 1894.
For two years, they lived here on their own, until four Catholic Daughters of Charity of St. Vincent de Paul arrived in 1896. The sisters took the patients under their care and began what was to become a 109-year commitment.
In 1905, the state of Louisiana purchased the property, and the estate became the first home in the United States for leprosy patients. Fifteen years and $35,000 later, the federal government bought the land and turned it into a National Leprosarium.
The site transformed into a sprawling complex, housing 450 patients in buildings linked by covered walkways. By the 1940s, it was a self-sustaining community with a power plant, an extensive drainage and sewer system and a 70-bed infirmary. There was a church and a theater, a golf course and a ballroom. Many patients spent hours fishing and gambling by the man-made lake, and everyone looked forward to the annual Mardi Gras parade.
From outside the thick bars of the wrought-iron fence, it resembled a high-class resort. Inside, it was a repository of hope for those afflicted with the disease. They had the best of care, all at no cost to themselves. Leading researchers worked tirelessly to end the worldwide public health problem, while hundreds of civil service employees maintained the property.
Yet there was a dark side as well. Patients were called “inmates” and were often sent here against their will. It wasn’t a choice to live at Carville; it was the law. Some were even brought in shackles, ripped from the arms of their families—never to go home again.
But then a miracle happened. In 1941, Dr. Guy Faget discovered the healing powers of sulfone drug therapy. The next three decades were a rush of drug innovations coupled with a burgeoning patients’ rights movement. The Leprosarium’s gates were eventually unlocked, and by 1946, patients were allowed to leave the property for two months a year. Then a multi-drug therapy developed in the 1970s led to Hansen’s disease officially becoming an outpatient treatment by the 1980s.
There are still roughly 150 new cases in the United States every year, but early detection, proper drug treatment and rehabilitation can mitigate what used to be a crippling disease. No longer needed, the property was returned to the state of Louisiana in 1999, a year after the National Hansen’s Disease Programs relocated to Baton Rouge. The remaining Carville patients were given the option to stay or take a stipend and begin a new life outside the iron walls.
Hansen’s disease plagued the world for hundreds of years; yet through the sacrifices of those afflicted by the sickness and the perseverance of those intent on curing it, small-town Carville became the center of hope for victims worldwide. It’s a unique piece of Louisiana history worth learning about and reliving through the eyes of those who experienced it firsthand.
Kristy Christiansen is a New Orleans, Louisiana-based travel writer. Read about her Bayou State adventures in her Getting Lost in Louisiana blog.
Contact the museum for current dates and times of operation and to register for a guided tour. As it is a military base, visitors should be prepared to show ID at the gate, as well as obey traffic and photography rules.