Living with leprosy

For almost six decades, Simeon Peterson – or Mr Pete as he likes to be known – has called the National Leprosarium in Carville, Louisiana, home.

He is one of the 6,500 people in the US, who suffer from leprosy or the effects of the disease.

The small, thin man, looking dapper in his black hat, shirt and braces, has braved a torrential downpour to cycle to the former plantation mansion at the centre of the leprosarium, to tell me about his life in what until 1921 was known as the Louisiana Leper Home.

As he peels off his black wool gloves, the toll leprosy has taken on him is clearly visible. He may only have three fingers left on his right hand, but his handshake is firm.

“I was diagnosed with leprosy when I was five,” he says. Then he corrects himself and says: “Hansen’s Disease. I was diagnosed with Hansen’s Disease.”

Leprosy is a chronic infectious disease that attacks skin, peripheral nerves and mucous membranes. It is one of the most feared infectious diseases and the stigma surrounding it goes back to Biblical times. So it comes as little surprise that when Norwegian doctor Gerhard Armauer Hansen discovered the bacterium that causes leprosy (Mycobacterium leprae), many patients and doctors were keen to switch to its new clinical name: Hansen’s Disease (HD).

Having lived with the disease for most of his life, Mr Pete is more than familiar with both terms. He tells me his brother and sister were also diagnosed with HD. Where they got it from, he does not know.

Between 150-200 people in the US are diagnosed with HD every year. But, to this day, leprosy remains one of the least understood infectious diseases.

The most commonly accepted theory is that it is transmitted through the sneezes and coughs of untreated patients, says Jim Krahenbuhl, director of the National Hansen’s Disease Program. But contrary to popular belief, it is far less contagious than other infectious diseases. In fact, more than 95% of people have a natural immunity to leprosy.

Mr Pete and his siblings are among the 5% who do not have that immunity.

When he developed a spot on his finger – one of the tell-tale signs of leprosy – he went to the local hospital on his island home of St Croix on the US Virgin Islands. The hospital housed a number of leprosy patients, but offered no effective treatment.

So, when in 1951 a doctor from the only leprosarium in the continental United States came to visit and offered the patients the chance to go to Carville, he and 18 others took it.

When he arrived at the former sugar plantation on a bend of the Mississippi River, there where more than 400 patients living there. Most of them had changed their names or were using aliases so as not to cause their families any embarrassment.

Some had been taken to the leprosarium against their will, at a time when isolating patients was believed to be the best way of preventing contagion.

The severity of the leprosy cases at the hospital in Carville differed. Some patients only had small spots or lesions. In others, the leprosy bacteria had damaged the nerves in their extremities. Nerve damage meant patients would lose the sensation in their hands and feet.

Unable to feel pain, they would repeatedly injure their fingers and toes, the damaged bones would become shorter and shorter, resulting in the hallmark deformed hands and feet leprosy is so feared for.

Mr Pete has mixed memories of Carville during that time.

“It was very restrictive,” he says. “We weren’t allowed to leave the grounds. We had to stay here all the time.”

But, he says, the wire fence surrounding the hospital was no obstacle to him and his fellow patients. At weekends, they would crawl through a hole in the fence and escape to nearby Baton Rouge to drink and dance the night away. But they always kept their identities secret.

“You couldn’t tell people you were from Carville, them days you couldn’t do that, they would have got scared,” Mr Pete explains. “They would have said ‘Oh my God, you have leprosy?’ and called the police for you.'”

Over the decades, the rules at Carville were relaxed considerably. In 1941, 10 patients at the hospital volunteered for treatment with a drug called Promin. The results after many months of painful intravenous injections with the sulfone drug were described by doctors and patients as miraculous. It cured leprosy and within weeks it stopped patients from being contagious.

No longer contagious, the people at Carville started to be treated more like patients than prisoners. In 1946, they were given the right to vote, which had been denied to them until then. And slowly, they were allowed to leave the grounds, first on day passes, and later whenever they wanted.

Carville became its own community, and a diverse one at that, with a large number of African-American and Hispanic patients. They had their own churches, bakeries and post offices. They married and split up, organised dances, baseball games and Mardi Gras processions. But, Mr Pete says, it was not exempt from the challenges and problems of the time either, some of which he rebelled against.

“In the theatre, there were two rows of seats for us, the black. Then there were two rows of seats for the doctors – no patients could sit there,” he remembers. But he and some other African-American patients started sitting there. “We’re in prison already, what are you going to do?” they asked the doctors and nurses.

“And they stopped it. They may call me a rebel, but so what? You make it good for somebody else,” he says and chuckles.

With effective multi-drug treatment in tablet form being developed in the 1970s, fewer and fewer patients needed to stay at the leprosarium and numbers quickly dwindled. Some elderly patients chose to move to a care home in Baton Rouge, others moved in with their relatives. But a handful decided to stay in the place that had become their home.

In 1999, the hospital relocated to Baton Rouge and Carville was taken over by the National Guard, which runs a training programme for at-risk youth. Eight former patients still live at the former leprosarium.

Mr Pete says much of the community spirit has disappeared, though. The patients do not get together like they used to. “After supper, everybody goes into their rooms and switches on their TV. I’m telling you that TV got us, we’re hooked on that TV.”

Mr Pete himself spends one afternoon a week working in the National Hansen’s Disease Program museum as an ambassador, educating visitors about the disease and trying to dispel some of the stigma still associated with it.

He says there are still a few people who are scared when they hear the word leprosy.

“But they’ll get into it,” he says confidently.

He particularly enjoys talking to groups of children that visit the museum on school trips.

“They ask tough questions, they ask me about my hands, but I answer them,” he says proudly. To him, knowledge about the disease will eventually beat the stigma. And the earlier you can educate people about it, the better.

“See, you know now, everything is good now. I’m doing good,” he tells the children.