Cases of leprosy on the rise in U.S.
Sharon Lerner The New York Times
Thursday, February 20, 2003 NEW YORK

When the rash on his chest first appeared, the 48-year-old office worker dismissed it as an allergic reaction to the shellfish. he had recently eaten. His doctor agreed and prescribed an ointment. But when the red bumps did not go away after several months and began to spread to his legs, arms and face, the man began to worry. He saw another doctor, who had no explanation for his condition, and finally another, who gave him a startling diagnosis: leprosy.

In the United States, leprosy is usually regarded as a plague of the past, a disease relegated to biblical times or, perhaps, to poor and distant countries. But, in fact, as cases of leprosy have been declining worldwide in recent years, the infection has actually been on the rise in the United States.

While there were some 900 recorded cases in the United States 40 years ago, today more than 7,000 people have leprosy, or Hansen's disease, as it is now called. ''And those are the ones we know about,'' said Dr. William Levis, attending physician at Bellevue Hospital's Hansen's Disease Clinic. ''There are probably many, many more.''

The disease, even with its sanitized name, can still confer pariah status on the victim. Thus, there is no sign on the door announcing Bellevue's clinic, even though it has almost 500 people receiving regular outpatient care and is one of only 11 federal Hansen's disease centers. On a recent morning, a sampling of patients, all of them wishing to remain anonymous, said they were loath to tell others about their diagnoses.

A Queens man tells his friends that the bumpy patches on his arms are allergies, and a stylish college student has kept her infection secret from everyone but her grandmother. A 61-year-old Staten Island man who is being treated for a recurrence of leprosy he first contracted 40 years ago says he still has not told his wife of 33 years.

Most of those infected in the United States are immigrants from global leprosy hot spots, places like Brazil, India and the Caribbean. But, in the past six years, Levis and his colleagues have proved that a few of his patients - including a 73-year-old man from Queens who had never been out of the country and an elderly Jewish man from Westchester County - have contracted leprosy in the United States.

As a result, The disease is now officially endemic to the Northeastern United States for the first time ever. (Cases of leprosy transmission in the Southeast date as far back as the turn of the 19th century.) Leprosy experts think that even some foreign-born people with the infection may have acquired it in immigrant communities here.

Levis has tried to increase other physicians' awareness of the disease through mailings, telephone calls and lectures. Still,

Leprosy's symptoms - bumpy rashes, skin indentations and loss of feeling in hands and feet - are often misdiagnosed for a variety of disorders, including bug bites and lupus.

Promptly recognized, the disease can be relatively easy to treat. With a standard regimen of multiple drugs, a vast majority of people with leprosy cease to be contagious within three months and become free of the bacteria that cause it in two to five years. Without treatment, the disease can be spread. The bacteria are thought to be passed through the respiratory droplets of an infected person. Untreated infections can also result in serious complications, including the loss of toes or limbs.

That is what happened to a 47-year-old father of four who was born in Guyana. He spent years in search of a doctor who could help him with his escalating skin problems, but dermatologists did not know what to make of the red and white spots on his face and body, first appearing in the early 1980s. When he arrived at a Brooklyn emergency room a few years later, no one guessed the cause of his severe foot infection, even when it resulted in the loss of one toe and part of another.

At the Hansen's disease centers, such serious foot problems are often prevented with special shoes and physical therapy. Patients are warned not to spend too much time on their feet, because their lack of sensitivity to the strains of standing and walking make them prone to sores and infections. But, with many cases going undiagnosed and untreated for years, a quarter of leprosy patients in the United States end up with disfigurement and disability that persist even after the bacteria that caused them are banished. The disease's permanent aftereffects include muscle atrophy, foot dragging, blindness, a contraction of the fingers that doctors call "claw hand," and, among men, infertility. Because of these problems and because of the taint of its victims, leprosy and its diagnosis can bring a mix of shock and relief.

"When he started explaining things to me, I thought he was crazy," the patient from Guyana said. "Leprosy? Hansen's disease? I said, no, not me." But after 15 years in which his doctor first cleared the leprosy-causing bacteria from his body and then tried to alleviate the numbness, limping and severe case of claw hand that it brought, the patient changed his mind about Levis. "He's the only one who was able to help me with all this stuff," the patient said, "so I guess he's not crazy after all."