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Improving Lot of Leprosy Patients : Louisiana Center Spearheads Hansen's Disease Research

Charles Hillinger's America

March 24, 1985|CHARLES HILLINGER | Times Staff Writer

CARVILLE, La. — Antonio Pacheco was 29, a steelworker in Pueblo, Colo., when red spots suddenly appeared on his chest. He went to a doctor.

The doctor asked Pacheco if his chest hurt. The steelworker told him no. The doctor said the spots would go away, to forget about them.

But the spots did not go away. Soon five nodules appeared on Pacheco's face. The year was 1929.

He had leprosy.

"It was like the world had come to an end," said Pacheco, now 83, head librarian for the patients' library at the U.S. Public Health Service's National Hansen's Disease Center on the Mississippi River 25 miles south of Baton Rouge.

The national leprosarium is the only institution in the continental United States devoted exclusively to treatment of the disease and research and training related to it.

'Treated Like Criminals'

The only other Hansen's disease hospital in the United States is at Molokai, Hawaii, which has 112 patients, but all research and training for the disease takes place at Carville, which has 350 patients.

"When I came here people with Hansen's disease were treated like criminals," Pacheco recalled. "They were held in jail, then transported to Carville in special trains with windows sealed and blinds pulled down.

"There was barbed wire around this hospital. When we arrived we lost our status as citizens. We could no longer vote. We suffered a double burden--the disease and the terrible stigma.

"It was hell."

Pacheco is lucky. He isn't disfigured. His fingers are not twisted. His hands are not clawed. His nose isn't flattened. He isn't blind and crippled like many of the patients at Carville. The disease was detected on his body early.

When he came here the hospital was known locally as the Louisiana Leper Home.

Name Lessens Stigma

"You know the name alone condemned the poor patients. This is why the government agreed to use the name Hansen's disease to describe our ailment, to lessen the social stigma associated with it," the librarian said.

Hansen was Gerhard A. Hansen, a Norwegian scientist who first discovered the rod-shaped microorganism Mycobacterium leprae in 1874. It was the first bacterium noted as a causative agent of a human communicable disease. The organism closely resembled the causative agent of tuberculosis in size and shape.

Considerable progress has been made during the past half century, primarily because of research at Carville, facilitating the treatment of the majority of cases without undue difficulty and counteracting most of the fears generated by the folklore surrounding this disease.

Pacheco was a patient here from 1929 to 1944. He was married in 1942. That was a first.

"Until I got married those with the disease in the United States were not allowed to marry another patient, much less marry a well person," Pacheco said. The disease flared up again and the librarian returned to Carville from 1960 to 1967. He lived on the outside until 1970 when his wife died, then he came back and has lived here ever since.

Up until 1965, it was mandatory that anyone living in the 48 states who had Hansen's disease be sent here.

"This U.S. Public Health Service hospital is the world's leading training and research center for leprosy, as the disease is called everywhere else in the world," explained Dr. John R. Trautman, 58, director of the center for the past 18 years.

In years past many patients were sent here for the rest of their lives. Today, nearly all new patients stay an average of three weeks. Then they are treated on an outpatient basis in general hospitals, clinics and by private physicians across the nation.

There are a dozen regional Hansen's disease clinics, three in California--at the Los Angeles County USC Medical Center, the North San Diego Health Center and the Seton Medical Center in San Francisco.

Toll-Free Number

The National Hansen's Disease Center at Carville provides care for anyone in the nation. Any physician or person having a problem or question concerning Hansen's disease may call the NHDC toll-free, (800) 642-2477.

Most persons are rendered non-infectious within a short time and are no longer a public health problem as long as they take the treatment. The word inactivated rather than cured is generally used.

"There are about 5,000 to 6,000 persons in the United States and its possessions with Hansen's disease," Trautman said. There may be as many as 20 million cases of Hansen's disease in the world, but fewer than 20% receive regular treatment.

Hansen's disease is widespread in India, Southeast Asia (Vietnam, Laos and Cambodia), Central Africa, South America and, to a lesser extent, Mexico and Central America.

"Hansen's disease is one of the top three infectious diseases on earth, and one of the world's leading causes of disfiguration," Trautman said. "India, with one-third of all leprosy cases, has entire villages with 18,000 and more people with the disease."

Early Detection

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