Museum records history of leprosy

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CARVILLE, La. -- When Mary Ruth Daigle first arrived in Carville, La., in 1939, she was a patient.

Today, she is a guide at the Trautman Museum, a newly expanded facility at the Gillis W. Long Hansen's Disease Center, which for years was a treatment center for the disease formerly called leprosy.

Visiting the museum provides a fascinating overview of the history of the feared disease, the eventual triumph of treatment and the lives of those the disease has touched dramatically.

There is no more authentic way to learn about Hansen's Disease than to listen to a tour guide who has lived through it first hand.

"I didn't want to come," Daigle recalled of her experience following her diagnosis in 1939. "But they said 'You have to be isolated, or we will put a yellow ribbon around your house.' "

Then she found out that her sister had been admitted in 1935 -- shame surrounding the disease had prevented Daigle's mother from telling her until it was time for her to go, too.

"We came by train, and my sister came and picked me up. So it wasn't as difficult because at least I had someone that I knew."

Hansen's Disease, which is still called leprosy in many parts of the world, is a chronic infectious disease caused by mycobacterium leprae, but the fear of the disease always has been greater than the actual threat of contagion.

A worldwide leprosy scare in the 1890s forced thousands of sufferers into new treatment centers, as segregation and isolation became common policy.

Originally called the Louisiana Leper Home -- and usually known simply as "Carville" -- the facility, where Daigle still lives, opened in the 1890s on the site of Indian Camp, a 300-acre sugar plantation on a bend of the Mississippi River between New Orleans and Baton Rouge, La.

Set among lush lawns and pecan trees, it was renamed the National Leprosarium when the federal government purchased it in 1921.

Soon, the facility was recognized worldwide as a leading treatment center, and it was here that the use of sulfone drugs first proved effective in 1941.

But sulfone wasn't around when Daigle arrived, and she knows all too well about the years of failed treatment that patients endured. She still rubs her hip when she talks about the painful shots of chaulmoogra oil that she received initially. "I still feel it," she said.

"We had to take it in a shot on our hip. And then we had to take the capsules by mouth at mealtime, which made you sick to your stomach."

The same year that she arrived, she met the man she would marry, who had arrived as a patient earlier that year. "He was from Lake Charles, La.," she said.

"We got married Oct. 6, 1946." Because patients at Carville were allowed to leave for short periods of time, they were able to have the ceremony in New Orleans and take a honeymoon in St. Louis.

"At that time, they let the patients go out just 10 days, twice a year."

Carville's population reached its peak in the 1950s, when 400 patients called the institution home.

In the 1990s, the caseload dipped to fewer than 150, and a decision was made in 1998 to move the facility from its 100-building campus in Carville to Summit Hospital in Baton Rouge.

Some patients protested. After spending most of their lives at the facility, many were not eager to make a foray into a world that had shunned them for so long.

Ultimately, patients were offered a $33,000-a-year stipend if they left Carville, or could choose to stay in a single building on the grounds, with a daily shuttle bus offering visits to Summit Hospital.

"My husband and I knew there would be change," recalled Daigle, "and we talked about it almost every day.

And he said, 'Sweetie, we have to stay here. We cannot go.' We were here already 57 years. He said, 'We're going to stay here because where are we going to make friends, where are we going to get a job?'

So we stayed here. He died just two-and-a half years ago."

Most of the Carville campus is now used by a National Guard youth program, but a handful of patients have chosen to remain.

Facility gets more space

CARVILLE, La. -- The Trautman Museum, which opened in 1996 and was named in honor of Dr. John R. Trautman, an assistant surgeon general who served at Carville for 28 years, has expanded.

In June, it moved to a larger space in a Classical revival building behind the original antebellum plantation home where it had been housed.

The museum's expansion was a "dream come true," according to Sister Margaret Brou, a Carville volunteer and member of the Daughters of Charity of St. Vincent DePaul, a group that has provided care at Carville since 1896.

The museum consists of several rooms, filled with photos and exhibits about patient life, medical breakthroughs and setbacks.

There is also a re-created patient room from the 1940s, and the museum's gift shop sells a variety of items, including books, souvenirs, and artwork by the patients.

Since the museum expanded earlier this year, "we've had roughly 300 visitors," said Daigle. "I think that's good because we haven't even been advertised."

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