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Half of City Leprosy Sufferers Go Undiagnosed, Doctor Says

 Dr. William Levis, attending physician at New York's leprosy clinic, said he is still learning new things about the disease after decades spent treating it.
Dr. William Levis, attending physician at New York's leprosy clinic, said he is still learning new things about the disease after decades spent treating it.
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DNAinfo/Eddie Small

NEW YORK — Roughly half of all patients with leprosy are not getting treatment for their disease, even though the notorious illness is much easier to care for than its reputation would suggest, according to doctors in New York who specialize in the sickness.

“I would much rather have leprosy than diabetes any day of the week. Are you kidding me?” said Dr. Louis Iannuzzi, who has been treating leprosy patients in New York for 37 years. “Leprosy is curable. Diabetes is not.”

Iannuzzi works at NYC Health + Hospitals/Bellevue’s leprosy clinic, and he estimates they see between 30 and 40 new cases of the disease per year.

Many of his patients are shocked when they first get their diagnosis, because they assume the sickness has been eradicated. It's still here, but it has become easy to treat, he said.

"In the 37 years I’ve been here," Iannuzzi said, "we’ve never lost one patient to an amputation."

Leprosy, also known as Hansen's disease, is a bacterial infection typically treated with a combination of antibiotics for between one and two years, according to the Centers for Disease Control and Prevention.

Scientists believe the disease is spread when an infected person sneezes or coughs and a healthy person then inhales the bacteria, but the definitive reason behind its spread between humans is still unknown, according to the CDC.

Multiple infected patients came to the clinic at Bellevue on Friday, most of whom had only mild physical signs of the disease, such as rashes or small growths on their skin.

"You can see that patients with Hansen's disease can still be beautiful," said Dr. William Levis, the attending physician at the clinic, "So it's important to know that."

Symptoms of leprosy include discoloration or growths on the skin, foot ulcers and swelling of the face or earlobes, and doctors diagnose the disease by taking a skin or nerve sample to look for the bacteria that causes it, known as Mycobacterium leprae, according to the CDC.

Levis has spent decades working with patients infected with leprosy but said he is still learning new things about the disease and firmly maintains that not enough patients are coming to the clinic for treatment.

"We aren’t seeing half of what’s around," he said, "and my guess is that at least half, if not more, are undiagnosed, and they’re out there."

Treating leprosy is incredibly important, as the disease can start to resemble its more stereotypical image if it goes undiagnosed, according to the CDC. Patients who do not get treated can experience nerve damage that leads to paralysis, along with facial deformities and blindness.

New York City had just three reported cases of leprosy in 2015, according to the Health Department, while 178 new cases were reported that year throughout the United States, according to the U.S. Department of Health and Human Services. Officials estimate that 95 percent of humans are immune to the disease.

Patients at Bellevue's clinic come from all over the northeast, according to Iannuzzi, as it can be difficult to find a doctor who can properly diagnosis their disease.

"If you go to a regular doctor, they might now know what this is," he said. "You hear hoof beats, you think of horses, not zebras. This is a zebra."

This will not be a problem at Bellevue's clinic, something Levis says he emphasizes to patients as soon as he starts treating them.

“That’s the first thing I tell patients when I meet them: we just treat leprosy,” Levis said. "That’s the only disease we specialize in, and we’ve cured every case that we’ve had."