Hansen's Disease

The historic cemetery behind the National Hasen's Disease Museum in Carville, La., contains graves of about 1,000 patients who were buried on site. (Credit: Kevin Thibodeaux)
The historic cemetery behind the National Hasen's Disease Museum in Carville, La., contains graves of about 1,000 patients who were buried on site. (Credit: Kevin Thibodeaux)

By Kevin Thibodeaux | LSU Student

CARVILLE, La. -- Once relegated to the outskirts of society, the National Hansen's Disease Program, centered in Baton Rouge, is attempting to bring the disease more commonly known as leprosy to the forefront of the public's attention.

Jim Krahenbuhl, director of the federal program, said the clinic operating out of the Oschner Medical Center is primarily an outpatient facility. Today, there are 3,800 people in the U.S. identified as being afflicted with leprosy. The national Hansen's disease program has 13 clinics around the country.

Carville is no longer a leprosarium, although nine patients once treated are allowed to live out their lives at the facility on the Mississippi River south of Baton Rouge. At one time, Carville was the only facility in the United States.

The disease affects the nervous system, causing loss of feeling. It is because of this nerve damage that infected patients will injure themselves or unknowningly become victim to secondary infections. Krahenbuhl said the disease itself doesn't cause extremities to fall off, as is the old stereotype. Instead, they will become "reabsorbed" into the body, becoming shorter and shorter.

Left untreated, the nerve damage becomes permanent. If it's caught in its early stages, the disease can be treated with drugs that will stop it before any damage is done to the nervous system.

The disease, which grows in cooler regions of the body like the nose, is primarily transmitted through person-to-person contact. Another leading cause of transmission is armadillos, which are ideal hosts for the disease because of their low internal core temperature.

The disease is slow growing and takes anywhere from three to 10 years to develop symptoms in humans, usually beginning with legions on the back, Krahenbuhl said. This is a main reason it took researchers so long to discover what was causing the disease.

"If you've got a case of gonorrhea, you got it Saturday night. You can trace where you got it," Krahenbuhl said, explaining that because of the long gestation period, it took scientist years to figure out that armadillos were carrying the disease, although it was long suspected.

One of the scientists conducting the type of research on armadillos that led to the discovery is Richard Truman, a researcher working with the Department of Health and Human Services' Hansen's Disease Research Program out of LSU's School of Veterinary Medicine.

Truman said the researchers knew the disease was spread by animals because of infected patients' proximity to wildlife.

The bacterium that causes Hansen's disease, M. leprae, can't be grown in a lab so scientists had to first figure out how to cultivate the disease in a living host. It was through this process that researchers discovered armadillos were natural carriers of the disease.

In 2000, researchers at the LSU Vet School joined a large scale collaboration to sequence the M. leprae genomes. Truman said the group then compared these genomes in humans and armadillos infected with the disease and discovered there was a large number of genomes shared between the two species, indicating there was a high probability that transmission started from armadillos.

The discovery was published in a paper in the New England Journal of Medicine in 2011 and went on to bring the disease back to the public's attention, Krahenbuhl said.

Krahenbuhl also noted that leprosy of the Bible is not the same as what people associate with Hansen's disease, but the stigma from that era remains.

There is a large concentration of infected armadillos along the Gulf Coast in Louisiana and Mississippi, Krahenbuhl said, which is why in 1894 the state of Louisiana established a home for persons infected with leprosy in Carville. It was staffed by an order of nuns, the Daughters of Charity.

In 1921, the federal government took over and began sending patients from all over the country.

The 5,000 patients sent to Carville lost their right to vote and were considered the same as criminals in the eyes of the law, according to Elizabeth Schexnyder, curator of the National Hansen's Disease Museum in Carville, which housed these patients in the early 20th century.

Schexnyder said 1,000 patients were buried on site, and residents as young as 3 years old lived in Carville.

Krahenbuhl said patients "essentially got a life sentence for having the disease."

In 1941, a drug for treatment was developed and administered to patients each month for a year. Once the patients were cleared of the disease, they were free to leave. In 1999, the program was moved from Carville to its current location in Oschner's.

Krahenbuhl said the goal now is to spread knowledge about the disease to doctors across the country so they can treat the infection before the damage is permanent.

He said other than areas where armadillo populations are prominent like the Gulf Coast region, the program is also reaching out to port cities and areas where immigration is high.

Ultimately Krahenbuhl said the paper published by Truman and other researchers was good for two purposes: raising awareness to be wary of armadillos as well as alerting doctors to look out for symptoms and lifestyles that may lead to leprosy.