The Decolonization of Carville

Carville, La., is the only center in the continental U.S. for the treatment of Hansen's Disease (HD), commonly known as leprosy. Its residents are daily contradicting HD's public image by responding favorably to new medical treatments, dispelling myths about the disease, and enjoying active social lives within the 336-acre compound.

(Author's note: The names Li and Tony are pseudonyms used to protect the identity of actual patients at Carville)

"All of a sudden, my friends at school started treating me differently. They stopped playing with me. They were not good to me. They weren't my friends anymore."

Li sat at the edge of her bed, eyes cast downward. Though she spoke evenly and matter-of-factly, her eyes murmured a deeper sorrow, deeper than her words, deeper than a child of 13 must usually bear.

When she and her family escaped from Vietnam in the mid-seventies, Li felt certain she had left the horrors of her childhood behind her. Like thousands of other refugees from her embattled country, she began a new life in a new land. Attending public school in Dallas, Tex., Li quickly made friends with her classmates, learning their games and customs and teaching them her own. Her assimilation proceeded happily, without a hitch.

Then came rejection. Worse than rejection. Ostracism.

In 1977, at the age of 11, Li noticed some numb spots and blemishes on her skin. Doctors diagnosed Hansen's Disease (HD).

Although drugs are now available to arrest the disease and render its effects virtually unnoticeable in many cases, Li reacted unfavorably to initial medical treatments. As her ailment spread, bumps and purple splotches veiled her attractive face.

Friends recoiled. They feared her appearance. Parents reinforced the fears, telling their children to keep their distance. In whispers, word was passed that Li's disease had another name, a name shrouded in mystery and misconception since Biblical times. Li had leprosy.

To receive adequate medical attention, Li had to leave her family and travel to Carville, La., where the U.S. department of Public Health operates a treatment center and longterm care facility for HD victims. The center is the only one in the continental United States.

Carville sprawls across 336 peaceful acres along a bend in the Mississippi River between New Orleans and Baton Rouge, functioning more as a self-contained community than a hospital. Though much has changed since the night in 1894 when a group of crafty sisters of charity used a barge to smuggle seven leprosy patients up river from New Orleans while telling suspicious residents of the nearby town they planned to establish an ostrich farm on the abandoned Indian Camp Plantation grounds, Carville still contains enough of a "leper colony" aura to frighten the most stoic newcomer.

Li says she was not afraid.

With a cheerful grin, she simply describes the hospital as "o.k.," and leaves it at that. As Carville's youngest patient, skipping through its pastel-pink corridors in pink jeans and a ruffled white blouse, her exuberance and optimism undoubtedly have some effect on the older denizens. Many of them have lived at Carville for decades, creaking through its paint-peeled corridors in wobbly wheelchairs. Does she cheer them with her smiles? Or do they look at her and fear for her future, seeing their own shattered features mirrored in her ravaged face?

For all their misfortune, most of those older patients are optimistic for Li. They know she need not share their fate. Medical advances made since the time of their affliction have given new hope to HD victims throughout the world. Carville researchers are responsible for many of the most important strides, particularly for developing the sulphone-based drug, dapsone.

A cheaply produced tablet free from serious side-effects, dapsone has become the world's chief method of combating leprosy. Although the bacteria causing HD display increasing signs of developing resistance to the drug, dapsone remains an effective means of arresting the illness when a patient suffers from the pure-tuberculoid strain, a less-severe type of HD. Victims with this form of illness can usually expect to lead perfectly normal lives without any of the scars and deformities ordinarily associated with leprosy, if doctors diagnose the condition at an early stage.

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