By Rachel Solomon
When the Filipina woman came to the small clinic at Harborview Medical Center, she was certain the skin lesions that darkened her body were lymphoma. That’s what the doctors initially told her.
But when they took a skin biopsy, the doctors said it wasn’t lymphoma — it was leprosy.
Perfectly treatable, even curable if caught early. But the woman was devastated.
“She preferred lymphoma over leprosy,” said Elizabeth Dobler, a fourth-year medical student working at Harborview. “Leprosy is totally treatable. A lymphoma could kill you.”
Harborview’s Hansen’s Disease Clinic — a reference to the other name for leprosy — is one of just 15 federally funded clinics in the country dedicated to treating a disease most Americans think no longer exists.
Leprosy, an infectious disease that primarily attacks the skin and nerves, is not the terror it once was.
But to many of the clinic’s 150 patients, most of them immigrants, the stigma is often tougher to swallow than the actual diagnosis.
“Despite the fact that this may be a forgotten disease by most Americans, it’s still a very real concern,” said James Harnisch, the dermatologist who has run the Harborview clinic since the 1970s. “But people here often just think of leprosy as destroying your hands and feet and eyes and leaving you totally disfigured.”
It took almost a year of treatment and continued explanation before the woman’s depression about her leprosy began to fade. Her case reflects the lingering fear linked to one of the world’s most misunderstood infectious diseases.
Thanks to drug therapies, the prevalence of leprosy around the world has shrunk dramatically in the last few decades. The number of reported new cases dropped from 602,000 in 2002 to around 250,000 in 2008, according to the World Health Organization (WHO). But places like Brazil, India and islands in the Pacific still teem with the disease.
In the United States, there are only about 6,500 remaining cases, including about 200 new cases each year — numbers that have remained static since the 1980s. Harnisch said the Harborview clinic averages one new patient a month.
Back in the 1970s, around 75 percent of Harnisch’s patients were Vietnamese refugees. As those patients got better, more Hispanics and then more immigrants from the South Pacific islands — the Philippines, Samoa, Micronesia — trickled in.
During the past 10 years, many of the clinic’s new patients have come from India — including some professionals drawn here by the region’s tech boom. “Once they’re over here, they might bring their mother, their father, their sister or brother to live with them, and guess what? They have leprosy,” Harnisch said. That’s no surprise since nearly half of the world’s reported leprosy cases are in India, according to the WHO.
Fear of leprosy is ancient. People thought that the physical deformities it could cause were a curse from God. Sufferers became outcasts, and leper colonies became their new homes.
“When there was no treatment, once you got it, you had it for life, and it got worse and worse and worse through life,” said Philip Kirby, the clinic’s attending dermatologist. “That’s why those people were often confined to leper colonies.”
But leprosy — also known as Hansen’s Disease, after Norwegian doctor Gerhard Armauer Hansen who discovered the cause of the disease — isn’t spread through a handshake or a sneeze. It’s transmitted through close contact with an infected person over time, often facilitated by crowding, poor nutrition and bad hygiene.
Leprosy bacteria, which are in the same family of bacteria that cause tuberculosis, grow where it’s cool, so nerves on the arms, legs and around the eyes are most vulnerable. Hands and feet may go numb, and patients can get cuts or burns or lose digits without even feeling it. Some go blind.
The disease can be controlled with a multidrug-treatment regimen over a few years, Harnisch said. And longer treatment time lessens the chance of relapse.
But doctors worry when patients refuse to accept their diagnosis, something that happens all too often. Then the patients don’t take their medications or follow treatments, Kirby said.
So the doctors reframe the disease, introducing it first as a “temporary, curable infection,” Kirby said. Then they ease them into the leprosy diagnosis.
“I can’t say we’ve always been successful with that,” Kirby said. “We’ve treated some patients who went for years without complying for treatment because that meant somehow they were buying into what we said they had.”
For some patients, the trick is masking their leprosy from others — sometimes even spouses and children. Thinning and loss of eyebrows can be a telltale sign of leprosy, so doctors will color in bald spots with an eyebrow pencil or even transplant hair from a patient’s scalp, resulting in long, bushy brows.
When patients lose sensation in their feet, they are urged to wear special shoes with extra depth and custom inserts.
“We’ve had people refuse to wear these protective shoes because they thought that was going to be recognizable by friends and family,” Kirby said. “Anything that makes them look different can be something that they won’t do.”
And sometimes, the doctors lose touch with patients entirely. Their phones have been disconnected or they’ve returned to their home countries.
Leprology was a natural career path for Harnisch. He was interested in infectious disease, dermatology and internal medicine, and leprosy married all three. It was a challenge, and Harnisch liked that.
During his medical residency at Emory University’s Grady Hospital in Atlanta, Harnisch saw a patient with mysterious plantar lacerations matching those described with leprosy. It turned out to be diabetes.
But Harnisch said the case left him fascinated with leprosy. Though he worked on sexually transmitted diseases for the next several years, any patient with leprosy was routed to him.
When the Harborview clinic was established by the federal government, Harnisch was picked to head it.
More than 30 years later, little has changed — except that funding has taken a dive. The clinic used to be open every Wednesday. Now patients are seen every other Wednesday morning.
Scheduling can be frantic. If one day, 12 patients are on the calendar; maybe only a few will show up. Or the opposite happens, and 20 will pack the waiting room.
But the clinic remains a place where patients can come out of hiding. During appointments, their leprosy isn’t a secret, said Dobler, the medical student.
“We’ll all touch them and examine them and we aren’t afraid of them,” Dobler said. “Touching means a lot to patients. They appreciate when multiple people go up and touch their arms.”
Many of the students knew little about leprosy before beginning work at the clinic. That’s another reason the doctors are here: to teach, to make visible the disease that’s been forgotten by so many Americans.
“That’s an important thing, to pass on that understanding, so later on there are other people that can take care of these patients,” Harnisch said. “The disease is not going to go away.”
Rachel Solomon can be reached at rachel.l.solomon@gmail .com. This story was originally published in the Seattle Times August 2, 2010, and is shown here by permission.