Living with leprosy

Jul 06 2014, 10:27 IST
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SummaryThe stigma attached to the disease dates several centuries, spans cultures, and refuses to go

Throughout his adolescence, José Ramirez Jr, now a clinical social worker in Houston, had a shifting array of bewildering symptoms.

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 slightest rustle of a bedsheet. Or his forearms would turn numb.

Dermatologists were baffled. Eczema? Lupus? Spiritualists spoke of demonic possession.

Finally, Ramirez’s sister, who worked at the local hospital, persuaded two doctors there to take on her brother’s medical mystery. They did every possible test. 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 Louisiana.

Today, Ramirez, 66, is considered cured of the disorder, and he has no visible signs of it — no facial scarring or disfigurement, no loss of digits or clawing in of the hands and feet.

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, about leprosy, is probably wrong.

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

One research group recently proposed that leprosy may be the oldest infectious disease, 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 Programme.

And

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