Living with leprosy

The stigma attached to the disease dates several centuries, spans cultures, and refuses to go.

By: New York Times | Published: July 6, 2014 12:50:05 am

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 a flabby one, too. Whereas the genomes in most bacteria are streamlined sets of chemical instructions for spurring the fastest possible replication, recent studies have found that nearly half the DNA in M leprae consists of so-called pseudogenes, inert genetic sequences that once encoded proteins but are now so much nucleic dead weight.

That proportion of defunct code is among the highest detected in a micro-organism and helps explain why the leprosy pathogen has one of the slowest generation times of its unicellular kind, dividing just once every 12 to 14 days, against 20 minutes for the ubiquitous E coli.
Slow-growing though the bacteria may be, if left untreated, they will multiply into the many trillions, forming thick, scaly nodules on the face and extremities —“lepra” is the Greek word for scaly — and destroying the Schwann cells that sheathe and protect the nerves of the nervous system.

Today, Hansen’s is classified as a rare disease, yet  it still strikes some 200,000 people a year, most of them in Brazil, India and other developing nations. Medical historians are now overhauling leprosy tropes. Through new scrutiny of documents, art and skeletal remains from the medieval era, scholars are piecing together a more nuanced portrait of how the afflicted were viewed.

“There was a spectrum of attitudes and emotional reactions,” said Monica Green, a medical historian at Arizona State University, “which ranged from repulsion and rejection to sympathy and care and even nonchalance.”

Scholars have long cited the frenzied construction of monastery-like leprosariums across Europe from the 11th through the 14th centuries as evidence that the leprous were considered dangerous.  Carole Rawcliffe, a professor of medieval history at the University of East Anglia and author of Leprosy in Medieval England, has proposed that the real link between leprosy and pariah status dates to the 19th century, when promoters of the new germ theory of disease sought to bolster their case for the isolation of leprosy patients by citing medieval leprosariums as a precedent.

And the new generation of leprosariums constructed in the 19th and early 20th centuries were, indeed, isolation colonies. The Victorian fear of contagion arose even though Gerhard Armauer Hansen, the Norwegian doctor who discovered M leprae in 1874, ultimately failed to offer gold-standard proof of his organism’s pathogenicity.

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