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

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

In the United States, doctors are detecting Hansen’s disease at an early stage, and with early diagnosis and quick treatment “the patient should not have any serious problem at all with it,” Trautman said.

Dermatologists, neurosurgeons, nurses and general practitioners come to Carville throughout the year for seminars to learn how to detect the disease and how best to deal with the problem. In the last five years, 13,109 persons have attended the training sessions.

It was at Carville in 1941 that sulfone therapy was first used and found capable of inactivating the disease. And it was here in 1971 that the armadillo turned out to be the first experimental animal found susceptible to Hansen’s disease. Ever since scientists learned the disease could be transmitted through armadillos, potential cures have been tried on the animal.

“We are now using multiple drug treatment for Hansen’s disease,” Trautman said. “Scientists doing research here have many irons in the fire and expect to come up with more ways to extend eradication of the disease in this country and the world.”

300-a-Year Increase

In the past 10 years the number of cases detected has been increasing 300 a year or more in America because of the influx of immigrants from Southeast Asia, Mexico and South America. Only 5% of those who have the disease in this country were born in the United States.

But Trautman said it is a disease that is not easily spread, that there is a long incubation period that sometimes takes 15 to 20 years before it manifests itself in telltale signs such as spots or nodules.

“There is no way of keeping Hansen’s disease out of this country until it is controlled in other parts of the world. If we do not keep an eye on it, it could get out of control here,” he said. “Nations that have the major problem with Hansen’s disease are least able to deal with it. That is why our work here at Carville is so important.”

The method of transmission is not known. No one working at the hospital in Carville has been infected with the disease since the early 1920s, and none of the 108 Catholic nuns who have worked as nurses at the hospital since 1896 have ever had it.

Motivated by Article

The leprosarium was started at an abandoned pre-Civil War plantation at Carville in 1894 by Dr. Isadore Dyer. He became interested in the disease after reading an article about leprosy by John S. Kendall, a reporter for the New Orleans Daily Picayune.

Kendall wrote about eight men and two women with the disease living in a squalid cottage in New Orleans and called attention to the fact that there were a number of other infected individuals in the city who were not being cared for.

Dyer successfully petitioned the Louisiana Legislature to establish a hospital at the Carville plantation. In November, 1894, seven leprosy patients sailed up the Mississippi from New Orleans in a coal barge to the plantation where they were dropped off and left to fend for themselves.

Two years later, the nuns of the Daughters of Charity of St. Vincent de Paul assumed responsibility for caring for the sufferers of the dreaded disease. For many years the hospital was staffed exclusively by the nuns. The sisters continue to this day as nurses here.

Heartbreaking Stories

“Every patient who comes to Carville has a heartbreaking story,” said Sister Vincent Fleer, 72, a nurse at the hospital since 1946. “There is more acceptance for them now than in the old days, but there remains a stigma no other disease has.

“These are ordinary people from all walks of life who are victims of a misfortune they have no control over. You cannot help but be inspired by every one of them, overcoming so many obstacles.”

One of the nuns, Sister Laura Stricker, 83, retired from the hospital three months ago after working 59 years caring for patients here. The Daughters of Charity staff 41 leprosariums worldwide.

Administrative headquarters at the 320-acre U.S. Public Health Services Center is in the 1854 plantation mansion that was renovated in 1927 and again in 1941. The huge stucco green-and-white infirmary was constructed in the 1930s.

Patients live in dormitories and in cottages. Many met and married other patients in the hospital while being treated for the disease.

The patients have a canteen, grocery store, post office, gift shop. Beauticians come in every Saturday. Bank tellers from a nearby town come every Tuesday to do their banking.

Leading Publication

Patients publish The Star, a bimonthly magazine with a circulation of 84,500, one of the leading publications on Hansen’s disease with subscribers in 50 states and 150 foreign countries. On the grounds there is a Catholic church and a Protestant church. Patient clubs include the American Legion, American Legion Auxiliary, Lions Club, Garden Club, the Patients Federation and the Mexican Club founded by Antonio Pacheco.

Julia Elwood, 45, is principal of the Hansen’s disease center’s elementary and secondary school with 30 students, ages 18 to 78. Elwood was the first patient to become a staff member at the center. She came to Carville when she was 15 from Elsa, Tex.

“I was devastated,” she said. “I had a small spot on my knee and then learned I had Hansen’s disease. People equate the disease with sin. A curse. I wondered what I had done to deserve such a horrible fate.”

Parents of Five

She was a junior in high school in Texas. She graduated from high school the following year at Carville in a class of four. Later, she married a patient. For both Elwood and her husband, the disease was detected early. They live in their own home not far from the center. They have five children, none of whom have had the disease. Hansen’s disease is not hereditary.

“I have always wondered why me,” Elwood mused. “There is no rhyme or reason. A very small percentage of the population is susceptible or call it allergic. I happen to be one.

“God willing, this horrible disease may someday vanish from the face of the earth.”