Living With Leprosy


As recently as 30 years ago, a leper in the United States could be arrested and incarcerated for life. Today, with any luck, a local with leprosy or Hansen’s disease, as it’s now called, will end up at Staten Island University Hospital, which houses one of the Country’s Nine Hansen’s Disease Centers. There patients can expect cutting-edge, sympathetic care: two years of doctors’ visits and antibiotics, which eventually clear up most symptoms and almost instantly make the disease noncontagious.

That such treatment is necessary in this country surprises many, including some of the infected and their doctors. Yet leprosy is emerging—burgeoning, even—as a modern problem. While there were some 900 cases of leprosy in the U.S. 35 years ago, today 10,000 are on record, 500 of them in the tristate area. “And those are cases we know about,” says William Levis, director of SIUH’s Hansen’s program. “The real number could be double or triple that easily. It probably is.”

That’s because most doctors are unfamiliar with leprosy’s symptoms—bumpy rashes, deep indentations in the skin and, eventually, loss of feeling in hands and feet—so many cases go unrecognized. One of Levis’s patients was misdiagnosed as having cancer and even had surgery to treat that condition before getting an accurate diagnosis. Another, who was visiting the clinic on a recent morning, was told she had a vitamin deficiency when she first presented the rash on her legs to doctors back home in Brazil. Then, upon her arrival in Jersey City eight months ago, she was given another diagnosis—lupus. After she finally found out that she in fact had leprosy, she cried for three days.

“I thought there was no hope,” says this 33-year-old woman, through her English-speaking boyfriend, who insisted on both his and her anonymity. Sitting on the examination table, glumly looking down at the red bumps that cover her legs and feet, she explains that she stayed home most of the summer, covering her legs so no one could see them. Even the disease’s new, sanitized name and the fact that the antibiotics will eventually banish it can’t fully soften her diagnosis, which she has revealed only to her mother back home and her boyfriend.

Another patient—a 58-year-old Brooklynite who is being treated for numbness in his feet, the result of a recurrence of Hansen’s, which he first contracted almost 40 years ago in Indonesia—is still more circumspect. He has kept his illness a secret from everyone he knows—including his wife of 31 years. “I’ve told her I have a skin problem,” says the perfectly healthy-looking man, who also spoke on the condition that his name not be mentioned. “Most people think very bad things.”

The omission probably doesn’t pose a huge risk to those in his life, since leprosy, despite being stigmatized as the ultimate contagion, is actually hard to catch. Fewer than one in 20 people is susceptible to infection with M. leprae, the bacteria that causes the disease and is thought to be passed through respiratory mucous. And even for the vulnerable, transmission requires close, intimate contact over many months. Serious consequences, such as blindness and nerve damage in the hands and feet (which can lead to the notorious missing limbs), only occur when the disease goes untreated for many years.

Still, early identification would spare many the frustrating odysseys through the health system. Levis, who has treated leprosy for the past 20 years, might have recognized the symptoms of the Long Island–born man who spent years going from doctor to doctor. First there was the lumpy swelling in his earlobes (his doctor said it would probably just go away). Then he had a discolored rash on his back and an unidentifiable growth in his nose, which someone finally thought to biopsy for M. leprae.

In his case, the delay resulted at least partly from the fact that, while Hansen’s almost always originates outside the U.S., particularly in Central and South America, Asia, and Africa, this retiree had never left the country. His history earned him the dubious distinction of being one of two proven cases in which people have contracted Hansen’s on the East Coast of this country, a landmark that SIUH’s Levis finds particularly disturbing.

“This proves that we have leprosy here,” says Levis. “We now know we have some secondary transmission, and we may have another hundred cases like that.”

For the retiree, the discovery has been a blessing—if a mixed one. While his case had reached the “full-blown” stage of leprosy, his symptoms are improving. He has regained some of his strength, which had ebbed to the point of cutting into his ability to play horseshoes. His skin has mostly cleared up (though, as they sometimes do, the antibiotics have caused the dead bacteria to collect in a mound on his arm). And he has the relief of knowing he can no longer pass the infection to anyone else.

But the diagnosis was—and still is—a shock. “When they first called I said, ‘Leprosy! Oh my! I never suspected that.”‘ 

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