CARVILLE, La. (WAFB) - For more than 100 years, Carville was the destination for leprosy patients from all over the country. The National Leprosarium closed in the 1990s and its last patients left just a few years ago, but their stories live on in the National Hansen’s Disease Museum.
The stigma associated with Hansen’s disease, or what most of us know better as leprosy, has been around since biblical times. In Leviticus, we find this:
“As long as they have the disease they remain unclean. They must live alone; they must live outside the camp.”
Alone. Outsiders. That’s how many patients initially felt when sent to the National Leprosarium. Louis Boudreaux, who arrived in 1934, described the feeling in a 1981 interview with Louisiana Public Broadcasting (LPB).
Boudreaux said, “Conditions were not very sanitary and it was more like a prison atmosphere. We had guards on the walks and there was a jail just like you would have in any little community."
That sentiment was echoed by Sister Laura in 1981. She was one of the Daughters of Charity who spent decades caring for the patients at the hospital.
She said, "The patients call it a jail. A prison."
With time though, the complex relationship between the patients and hospital would evolve. Seemingly conflicting feelings of isolation and liberation were common.
Elizabeth Schexnyder, the curator of the museum, described that complex web of emotions, saying, "You were either here because you were diagnosed with leprosy or you were here because you were helping find a solution to the problem of Hansen’s disease. So there was a certain amount of freedom being here. Of course, that meant separation from family, so that’s always a burden and it’s life-changing, not just for the patient, but for the family they left behind.”
Most patients didn’t arrive at Carville by choice, but that didn’t mean there wasn’t fun. Among the exhibits visitors will find is a float built by patients that was used in their annual Mardi Gras celebration. Visitors can also get a look at a Cushman scooter that belonged to one of the patients. At one time, there were enough scooters to support a club, with the patients taking advantage of the sprawling campus of more than 300 acres for their rides.
There was also fishing, and of course with fishing, comes a fish tale.
Frank Panepinto worked at Carville for nearly 40 years and describes when one of the residents told him his secret for catching so many fish.
“Well these gigantic concrete buildings and concrete walls... that concrete would get cold, and when it started warming up, the concrete would sweat. He just said, ‘Frank, when the walks sweat, the sacalait bite.’ Now, it takes a few years to figure that out. He had been out here about 60," said Panepinto.
But even in life’s simple things, such as a soft drink, the stigma lived on. Schexnyder explains the prevalence of Coke bottles on the campus that are featured in one of the exhibits.
“The thing is Coca Cola was happy to sell the bottles to the patients, but they wouldn’t take them back on refund, so patients ended up with hundreds, if not thousands of empty Coke bottles that had nowhere to go because remember, patients were quarantined, but so were the things that they used," she said.
One creative use patients found for those bottles was as a garden border. Today, visitors can find a replica of one of those Coke bottle gardens near the entrance to the museum. And once inside, visitors can relive the remarkable stories of the people who called the National Leprosarium home.
The National Hansen's Disease Museum is free and open to the public from 10 a.m. to 4 p.m., Tuesday through Saturday. A self-guided driving tour is also available, along with group tours that can be scheduled through the museum.
Click here for more information about the museum from the Health Resources & Services Administration.