Jose Ramirez and his daughter Erika, at his home in Houston, June 10, 2014. Ramierz spent seven years in an adult leprosarium before being cured and now gives talks around the world to help eradicate a profound public ignorance about the condition which he says contributes to many survivors’ shame and guilt.

Michael Stravato/The New York Times,

persistent: Rugged and feeble, Mycobacterium leprae has proven to have staying power.

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Jose Ramirez looks at pictures from his memoir about being diagnosed with leprosy at age 20, at his home in Houston, June 10, 2014. Ramierz now gives talks around the world to help eradicate a profound public ignorance about the condition which he says contributes to many survivors’ shame and guilt. (Michael Stravato/The New York Times)

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A girls’ leprosarium in Hawaii in the 1870s.

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“I’m absolutely convinced that leprosy must be thought of as a genetic disease, as well as an infectious one.” Erwin Schurr, a molecular geneticist at McGill University

Everything you think you know about leprosy is probably wrong

  • Article by: NATALIE ANGIER
  • New York Times
  • July 6, 2014 - 5:04 PM

Sometimes, he was feverish; at other times, nauseated. He’d find swellings on his hands and his feet and open sores that wouldn’t heal. He’d grow hypersensitive to touch, unable to bear even the rustle of a bedsheet.

Dermatologists were baffled. Eczema? Lupus? Varicose veins? Spiritualists spoke of demonic possession. Finally, Ramirez’s sister, who worked at a hospital, persuaded two doctors to take on her brother’s medical mystery. They sent biopsied tissue to federal researchers in Atlanta.

“Within 24 hours, the director of the Texas Health Department came to see me,” Ramirez said. “He told me I had leprosy.”

It was 1968, Ramirez had just turned 20, and he would spend the next seven years at the National Leprosarium in Carville, La. Today, Ramirez, 66, is considered cured of the disorder, and he has no visible signs of it — no facial scarring or disfigurement.

Emotional scarring is another matter. The “stigma, guilt and shame” that dog the disorder defy belief, Ramirez said. That is why he has given talks around the world, with the essential message that everything you think you know about Hansen’s disease is probably wrong.

That message resonates with researchers as well, who say that, for all the antiquity and notoriety of the disease, it continues to surprise and confound them. The illness can now readily be cured with antibiotics, yet the basic nature of the microbial culprit — a waxy, rod-shaped character called Mycobacterium leprae — is still being sketched out. Research suggests that the leprosy parasite is a paradox encapsulated — at once rugged and feeble, exacting and inept.

One research group proposed that leprosy may be the oldest infectious disease to go specifically for human beings, with origins dating back millions of years, certainly suggesting a pathogen of formidable persistence.

Yet scientists have also found that the leprosy bacillus is remarkably poor at migrating between human hosts. It dies quickly outside the body — a couple of hours on a lab slide, and that’s it — and about 95 percent of people appear immune to it.

“I refer to it as a wimp of a pathogen,” said Richard Truman, the chief of the laboratory research branch at the National Hansen’s Disease Program, a federal program.

The one puzzling exception to its refusal to grow in cell culture or nearly any nonhuman animal is the nine-banded armadillo, which, if anything, the microbe prefers over people. Researchers say they believe wild armadillos — insectivorous, plated mammals native to the Western Hemisphere and now found throughout much of Latin America and the southern United States — first contracted the infection from European settlers a couple of centuries ago, and the resulting disease looks a lot like human leprosy.

Armadillos are now a reservoir for the disease, and in coastal marsh habitats where population densities of the animal can be high, 20 percent or more of the armadillos are thought to be infected with M. leprae and capable of passing it on to susceptible people. Of the 200 cases diagnosed annually in the United States, most are thought to stem from contact with armadillos. Ramirez suspected he contracted Hansen’s during childhood stints with his migrant-worker grandfather in the field, where armadillos were a common sight.

Truman advises people who spot a wild armadillo to steer clear. He said, “I can’t think of any way of exposing yourself to greater risk than trying to shoot armadillos.”


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