Thanks in part to its Biblical past, the disfiguring disease leprosy carries more stigma than most diseases. We hear little about it today, but it still exists, and because it’s now treatable, often the stigma is worse than the disease.
Dr. David Scollard, Director, National Hansen’s Disease Program
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Nancy Benson: Few diseases carry the social stigma of leprosy, the skin and nerve disease also known as Hansen’s Disease. In ancient and biblical times, people who came down with leprosy were shunned, and as late as World War II, leper colonies were a common means of quarantine. The federal government even implemented a policy of mandatory quarantine as a way to constrain the disease. Doctors falsely believed that leprosy was highly infectious.
Dr. David Scollard: Incubation time was so long, they never knew when someone was going to get it. Or when someone was over it.
Benson: That’s Dr. David Scollard, director of the National Hansen’s Disease Program.
Scollard: So they said if you get this disease we’re going to put you away in a quarantine hospital or community. What that meant was you were basically imprisoned for life for having a disease. That was pretty much the practice around the world. And what happened in the United States, people were being evicted from their homes; they were being treated very badly in all different states. There are many, many different anecdotes you can fill books with them. People would be run out of town and their house and all its contents would be burned. And that was a real common kind of approach to this.
Benson: Leprosy’s history is documented as far back as 4,500 years, and doctors have known about the organism that causes it for more than a century.
Scollard: It was in the late 1800s that the germ was discovered. It was actually the first germ associated with a human disease and you can imagine when the first doctor, his name was Hansen from Norway, when he discovered this a lot of people didn’t want to believe it. The germ theory was a new idea and they knew germs caused some diseases in animals, but they didn’t think that applied to people. So you can imagine when he said, “I think this disease is caused by a germ,” people thought he was crazy. It took him a long time but, actually, this was kind of the birth of medical microbiology, but even to this day we can’t culture it in the lab like you grow other germs. Its genome is lacking some key elements we now understand to make important enzymes and proteins that it needs, so it can only live inside a cell. And the only natural hosts that are susceptible are people and nine-banded armadillos.
Benson: About 100 people per year develop leprosy in the US, many of them in the South where armadillos live. In very rare circumstances the disease can be fatal, but Scollard says the biggest concern about leprosy is disability. The germ destroys peripheral nerves that carry instructions from our brain to our hands and feet. However, it’s not true that leprosy causes those body parts to fall off, as people once believed. Leprosy also causes loss of sensation, which can progress to the point of being unable to feel deep pain.
Scollard: It can lead to motor paralysis and this is paralysis of the muscles that enable you, for example, to open your hand, to extend your fingers. But the muscles that enable you to close your fingers still work. And so the hand is pulled into this position, if you can just imagine if you can close your fingers, you can’t open them, it’s been called descriptively a “claw hand.” That hand is already anesthetic – can’t feel. This person can scald themselves cooking or a cigarette can burn them and they don’t even feel it. Those multiple injuries result in multiple traumas to the fingers which will cause them to be shortened, often by surgery. Some bones in the fingers can actually just be absorbed after this total process of paralysis has happened and they can just be absorbed. Fortunately, these advanced deformities are becoming less and less common. We can treat the disease so everybody we treat we prevent those deformities unless they are already present when we first see them.
Benson: Another major concern is the eyes. Scollard says the hands, feet, and eyes are all cooler parts of the body, which are the prime target of the leprosy bacterium.
Scollard: Now if you are walking down the street and you get something in your eye, you immediately stop and you bend over and you shelter your eye and you try to get it out. If you can’t feel it, you just keep going on. But what happens to the cornea is it gets scratched and it gets scarred and corneal scarring can lead to blindness. The lack of sensation and the lack of muscle, peripheral muscle control, are what causes the disabilities in this disease.
Benson: One of the challenges with leprosy is its slow incubation period. The delay between onset and detection can typically range from two to 10 years before symptoms develop. In extreme cases, symptoms can take as long as 20 years to appear.
Scollard: For a long time it was not treatable, not curable. The first medicine to treat this disease was discovered by this program during the 1940s. And that was the first time in human history this infection could be cured. Since that time we’ve not got six or seven drugs we can use and we can cure the infection in a fairly short period of time – one or two years, depending on the case. But it has a very long incubation time of seven to 10 years, sometimes even longer than that. That means you could be exposed now and not get it for 10 years and not know even that it was incubating. It’s important to realize too, that 95% of people are immune to this. They won’t get it no matter how heavily they’re exposed. So if 10 people are exposed with a sufficient exposure to the germ, one person gets it and it might take 10 years to show up.
Benson: But even in the five percent of people who would develop leprosy once exposed, Scollard says it’s not a horrifying disease. People can live with leprosy. He says diseases like tuberculosis and malaria are much more concerning because of their high mortality rates.
Scollard: Fear’s based on misunderstanding. Ninety-five percent of people won’t get this disease no matter how heavily they’re exposed. And there are old examples of that with a person would be affected and their spouse would go with them to live at the hospital and never get the disease. So 95% of adults anyway — children might be a little more susceptible — are immune. They won’t get it. And if you do get it we have good drugs to treat it and cure it. So it’s really not a disease that you have to be afraid of. The fear is based on misunderstanding and the old myths that go back a thousand years when it was incurable. And that’s not true anymore. We cure it every week.
Benson: But the old “biblical scourge” reputation has stuck. Even today with all the effective treatments available, leprosy is one of the most stigmatized diseases in the world. It may never be eradicated, but Scollard says elimination of leprosy is under way. The National Hansen’s Disease program is trying to develop a vaccine, but in the meantime, leprosy remains curable and early treatment can avert disability.
Scollard: It’s a very tragic thing because we can cure this infection and usually prevent or minimize most of these disabilities. The stigma is often more of a problem to the patient than the disease itself.
Benson: You can find out more about leprosy and the Hansen’s Disease Program through links on our website… radiohealthjournal.net. Our writer-producer this week is Heather Muno. Our production director is Sean Waldron. I’m Nancy Benson.