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Today, leprosy seems both antiquated and exotic, a disease if not extinct, then certainly foreign to the Houston area. According to dermatologist Dr. Terry Williams of the Houston Hansen's Disease Clinic, it is none of those things. About one person a month in the Greater Houston area is diagnosed with the disease — roughly half native-born Texans, with the other half from everywhere from Cuba to Vietnam — and Texas and Louisiana are the only states in which leprosy is still endemic.
Nevertheless, Williams says that in his 36 years of treating leprosy patients, many are shocked to learn that the disease still exists, and horrified to find out that they have it. Williams says making the diagnosis is among the most challenging aspects of treating leprosy, and many of the patients he sees have been to many doctors by the time they get to him. "Sometimes the disease presents first with sinus problems or nerve issues before there are skin problems, so they go see a neurologist first," he says.
Once patients are referred to Williams or his partner Dr. Steven Mays, they take a biopsy and send the tissue away for tests. Should those come back positive for leprosy, Williams sits the patients down and tells them the news as gently as possible. "We take a long time to sit down with them and tell them that it's curable, and the treatment is usually three antibiotics for two years," he says. "We give them a lot of advice."
They tell patients to keep the diagnosis quiet. "Usually when I see patients, I tell them to keep it to themselves, because there is just so much misunderstanding," Williams says. "They might get treated differently in the workplace — people get worried they might catch something. It's just easier to not say anything, keep it to their personal physicians and themselves. Some patients elect to not even tell their families. I leave that up to them. I'd say probably most of them do.
"I've been doing this a long time, so I've seen divorces happen because of misunderstanding or the husband not being able to handle the stigma of all that," he continues. "There are still a lot of strange things that go on because of misunderstanding."
Contrary to popular belief, there is minimal danger of contagion from leprosy. "It's not that contagious to begin with — you really have to work on getting it," says Williams. "Most people who do get it are family members that are genetically susceptible [only 5 percent of people are not immune], and even then, it takes a long exposure of being around someone with it for a while. Of all the years I have been doing this, we've only had a very small percentage of family members that have caught it. And once the diagnosis is made and treatment begins, their contagiousness goes down within days."
That's the rewarding part, he says. "It's pretty much a curable disease if we get them early enough." He also has the luxury of getting to know his patients very well. "Because it takes a long time — at least two years average — to do a full course of treatment, we get pretty close to the patients," he says. "We get to know them pretty well, their families and stuff. It's rewarding in that sense — we get a pretty good bond with them."
But catching it early is the key, because if leprosy is left untreated, permanent nerve damage can result. Nurse Marion Matsu of the Houston Hansen's Disease Clinic says that the clinic is working hard to raise the disease's profile, among both the medical profession and the general public. "Since it's not common, a lot of folks overlook it, and we're gonna work on that," she says. Part of that outreach will be to educate doctors about the early symptoms of leprosy. "Leprosy should be considered in any undiagnosed patient with chronic skin lesions or neuropathy or numbness or tingling," she says. "If a physician can't figure out why a patient is going numb in their feet, they should consider leprosy in the back of their mind."
And then there is the general public. Fear and stigma still exist, despite all the advances in treatment. "Hopefully, the more we talk about things, the less fearful we become," Matsu says. "It's like any disease. If you can understand it, you are more apt to seek help for it and not be so afraid or ashamed. It's nothing anyone did; it's nobody's fault. The people that have been working with it for years — none of them have it. That just shows you that it's not highly communicable at all."
Williams himself is living proof of that. Asked what people's reactions were when he told them he was a dermatologist specializing in leprosy, he said that most people were interested to know more. "Most people say they didn't know it still existed," he says. "Some people have heard a little bit about it. Most of them ask if it's curable. I've been doing this for 36 years, and so people always want to know if I ever caught it."
He chuckles at the absurdity of the idea. "No, I never have," he says.