St. Tammany Voiture 224


Hansen's Disease (Leprosy) and the "Carville Star" Publication


As one of our ongoing programs, the Voyageurs Militaire offer continuing support of the publication, "The Carville Star," which disseminates the information regarding the research into Hansen's Disease (Leprosy) taking place in Baton Rouge, Louisiana.  There they have been successful in isolating, controlling and soon, through their research, the development of a vaccine to prevent Hansen's Disease.  "The Star" is published at the former United States Public Health Service Hospital located in Carville, Louisiana.  This patient-published publication carries the research works of not only this center, but those of the rest of the world, and is translated into and forwarded to 128 countries in addition to a circulation of more than 60,000 in the United States.

CARVILLE – For a century, 300 fenced-off acres across the Mississippi River from White Castle were, to the rest of south Louisiana, a place of mystery and dread. Leprosy was all that most people needed – or wanted – to know about it.

Now, the National Hansen’s Disease Center and all but a handful of its patients have moved, replaced by the Louisiana National Guard’s Youth Challenge Program and a variety of other mostly military tenants. But a window into its misunderstood past remains.

Since 2002, the National Hansen’s Disease Museum has occupied a 6,000-squarefoot building originally built as the staff dining hall. It educates visitors not only about a once feared illness and the research breakthroughs that took place here, but about the distinct culture that developed the residents, both patients and caregivers.

“The visitors I really enjoy speaking to because I can relate to them in a real direct way, are the locals, people from south Louisiana who had some inkling that there was something around here, a mysterious hospital where this horrible malady lurked,” said curator Elizabeth Schexnyder.

The first Hansen’s Disease patients arrived in 1894 to an antebellum plantation that had been reconfigured both to care for and isolate them from the rest of the population. Research at the center would ultimately provide breakthroughs that made effective treatment possible and quarantining unnecessary.

Buy many people retain age-old fears of a disease that, for millennia, has caused society to drive away its victims.

“That it’s a curse, That it’s a stigma,” said Dr. Jim Krahenbuhl, director of the Nationale Hansen’s  Disease Programs, now based in Baton Rouge. “This disease is unprecedented. For a while, AIDS had the similar stigma, to the point where they said “We’re treated like lepers.”…..It’s in the Bible. It’s reinforced in the movies – fingers falling off and things like that. It’s all nonsense.”

Visitors learn that leprosy is not highly contagious, that 95 percent of the population has a natural immunity, Krahenbuhl said. Much of what the Bible describes as leprosy was other skin diseases. It did not cause fingers and toes to fall off. It is not fatal.

Which is not to say that it did not have devastating consequences. Caused by a bacteria, leprosy attacked the body’s cooler tissues, including the skin and peripheral nerves of the hands, feet and face. It disfigured. Victims often lost feeling in their extremities, so they would injure their hands and feet or suffer infections there without immediately realizing it. Molds of hands of Hansen’s Disease patients on display in the museum show awful results.

The museum also displays some of the center’s efforts to make life better for patients, such as adaptations to eating utensils and a wooden wheelchair used by patient Zella Brown of Durham Springs until her death in the 1990s. Although electric wheelchairs were available, Brown, a long-time patient, preferred using the hand cranks that were attached by a bicycle chain to the chair’s wheels.

A typical patients bedroom is recreated. Another room is dedicated to the Daughters of Charity, the Catholic order that arrived in 1896 and continued to work with patients until the facility relocated in 1999. But the museum’s largest section depicts life at Carville, which had its own businesses, post office, golf course, recreation center and publication

The Star Magazine was created by patient Stanley Stein after his arrival in 1931 as a way to reach beyond the fence to the larger world. Patient Johnny Harmon ran a photo business and also was a photographer for The Star, which had a circulation of 10,000 when Stein died in 1967 and later had as many as 160,000 subscribers, Schexnyder said.

“The Star provides a window into hospital life in the 40’s, 50’s, even issues with health care in the world at large,” Schexnyder said. “They had quite an audience of missionaries and patients overseas. I’m finding researchers are interested in coming back in and looking at these publications and writing about them today. We have an incredible wealth of photographs.”

Among the magazines fans was actress Tallulah Bankhead, who became a close friend of Stein’s. Their letters and telegrams to each other are exhibited. The veterans organization The Forty and Eight provided funds for a press and fought to allow patients to vote, a right that had been denied them until 1948.

Carville’s schools were racially integrated before any other in the south, Schexnyder said. Coca-Cola bottles were everywhere – used in a variety of ways in gardens and even graveyard adornments – because the distributor, fearing his other client’s reaction, refused to take the bottles back.

The centers trademark became the armadillo. One hurdle to finding treatments was that leprosy could not be grown in laboratories and was not thought to infect anything but humans. At Carville, researchers discovered that the armadillo, which has a cool body temperature, could contact the disease, which led to advances in drugs and vaccines.

The museum, which is open on weekdays, receives about 100 to 300 visitors a month, and Schexnyder gives walking tours of the facility on the last Saturday of each month. A good number of visitors are relatives of former patients who are trying to learn about their family member’s life, she said. Youth Challenge participants, who live at Carville for five months, also visit and ask the same questions as adults.

“This place has been a secret for a lot of people,” Krahenbuhl said. “The people who come here, when they leave they know a whole lot more than when they came. Their misconceptions are gone.”