Leprosy

ramonmercado

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Japan's schooling for scandal
By Jamie Miyazaki
In Tokyo


Many people in the developed world might associate leprosy and leper colonies with a by-gone era. But a Japanese committee revealed earlier this month that Japan ran leper colonies until 1996, despite medical evidence that they were unnecessary.

It found that "patients were treated as objects for research", patients' babies were killed and dead babies and foetuses of sufferers were preserved in macabre collections.



One health ministry scandal left hundreds infected with HIV
The report certainly made shocking reading. But its revelations about the motivation for the policy were not so surprising to those familiar with Japanese bureaucracy, pointing as it did to the cosy relationships between politicians, bureaucrats and business.

It concluded that the Health and Welfare Ministry, in conjunction with the powerful Japan Medical Association, was quarantining leprosy sufferers in order to secure larger budgets for the sanatoriums and to keep doctors employed.

Takesato Watanabe, a media ethics professor, said: "The medical lobby has a powerful influence on the government. They're big donors and so they get laws passed that are favourable to them."

No isolated case

And Japan's leprosy policy followed a long string of health-related scandals over the years.

There isn't a history in Japan of taking doctors to account

Derrick Buddles, manager at medical-device manufacturer Stryker
One of the most notorious dated back to the 1980s, when more than 1,400 Japanese haemophiliacs were exposed to HIV as a result of the Japanese Health Ministry's failure to ban unheated blood products, despite knowing they risked being tainted.

A senior doctor on the health and welfare ministry's Aids research panel was accused of delaying heat-treated blood products to help a Japanese pharmaceutical company that was behind in developing new sterilised blood products.

More recently, food companies repackaged imported beef as Japanese beef to claim government compensation in the wake of a mad cow disease scare, and last summer Japan Dental Association (JDA) members were charged with bribing senior politicians while the government was reviewing medical fees.

"There isn't a history in Japan of taking doctors to account," said Derrick Buddles, a manager at medical-device manufacturer Stryker in Tokyo.

Dr Michio Nakayama, a professor of bio-ethics at Niigata University's medical faculty, agreed, saying that in hierarchical Japan, where criticism of those in power is socially difficult, both the Japanese medical profession and health ministry have long taken a "doctor knows best" approach and simply shrugged off or ignored criticism.

The health ministry is not the only sector to be beset by scandal. Many areas of Japan's administration, from the banking sector to its nuclear industry, have been tainted over the years.

Media role

But it is not just the establishment that is at fault. Japan's media has played a part.

"The mass media were impotent in providing relief to the hidden human rights violations," said the leprosy council's report into the defunct quarantine policy.


Japan's press is constrained by an archaic system
The problem is that Japan's press, while nominally free, is constricted by the complex environment in which it operates.

Most journalists belong to hundreds of exclusive press clubs or "kisha clubs" which are affiliated to the organisations they cover. Club members depend on their host organisations for information and scoops. In return, there is a suspicion that they refrain from reporting issues affecting those organisations too critically.

Until recently clubs could prevent non-members from attending or asking questions at their respective press conferences.

But times are slowly changing.

A new Freedom of Information Act is helping the public and media to gain access to more information that used to be under the government's control.

As a result, Dr Nakayama said, "some articles are pointing out what the medical professions do not like to disclose".

'Could try harder'

But Professor Watanabe still sees room for improvement, and not just in the medical and health sphere.

"At the national level, I don't think information relating to things like diplomacy and defence is being disseminated properly, still," he said.

In one famous example, TV station NTV broadcast a report about food aid that Japanese Prime Minister Junichiro Koizumi was intending to give to North Korea during a controversial visit to the country as Japan attempted to find a solution to the delicate task of normalising relations between the two countries.

The government responded by threatening to throw the station off the accompanying press trip to Pyongyang unless it revealed its source, although it later relented.

The collusion between Japan's powerful troika of politicians, business and bureaucrats both undermines the media's effectiveness and creates a system which breeds the scandals it should be uncovering.

Unless that atmosphere changes, Japan's leprosy scandal is unlikely to be its last.

http://news.bbc.co.uk/1/hi/world/asia-p ... 358231.stm
 

ramonmercado

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Living with leprosy

Vanessa Buschschluter
BBC News, Louisiana

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.

HISTORY OF CARVILLE
# In 1894, an abandoned plantation in Louisiana become the only leprosy colony in the US
# The first patients were put on a barge from New Orleans at midnight and sent up the Mississippi to Carville
# The US Public Health Service took over in 1921
# Doctors there later developed an effective treatment for HD
# In 1999, the hospital relocated to Baton Rouge

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.

Photographs by Phil Coomes
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/a ... 648725.stm
 

Quake42

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I saw this earlier - fascinating, but I was shocked to realise that a "leper colony" could have existed in 20th century America.
 

ramonmercado

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Quake42 said:
I saw this earlier - fascinating, but I was shocked to realise that a "leper colony" could have existed in 20th century America.

And in Japan. Must look for more info.
 

jeff544

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What an eye opener.

These people were not allowed to vote until 1946? that looks outrageous from where we are now............
 

escargot

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I came across Paul Brand's The Gift Of Pain a few years ago. A wonderful read. :D

Brand worked with people with leprosy, or Hansen's disease as it's now called, for many years. Nobody was very interested until rich American diabetes organisations realised that they could learn a lot about foot care from him.

Some of Brand's methods were unusual. He 'prescribed' a pet cat for one particularly distressing Hansen's symptom, with resoundingly successful results. 8)
 

Beakmoo

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Which symptom was this? :? Having unscratched furniture?
 

ramonmercado

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Author of leper bestseller shuns Hollywood
http://entertainment.timesonline.co.uk/ ... 114106.ece
Richard Brooks

THE bestselling author Victoria Hislop has rejected an offer of about £300,000 from Hollywood to turn her debut novel about a leper colony off Crete into a blockbuster film.

Keen to preserve the integrity of the book and to give something back to the Mediterranean island on which it is based, Hislop has instead allowed one of Greece’s main television channels to dramatise her story for a fraction of the fee.

Since its publication in 2005, The Island has sold more than 1m copies in Britain alone, won several awards and been translated into more than a dozen languages, including Greek. The popularity of the novel in America led to Hislop, 50, being courted by several film studios.

“Some were offering me high six-figure dollar sums for the rights,” said Hislop, whose follow-up novel, The Return, set in Spain, has also been a success.

After spurning Hollywood, the author settled for “far less” from Mega, the Greek broadcaster, which is turning The Island into a 26-part drama that has just started filming.

“I really don’t mind,” said Hislop. “What I wanted, and will now get, is a chance to have a say in the TV series.

“Of course it is the writer’s script, but I feel much happier with some of my input and knowing that the Greeks, who took the book to their heart, will care about making the series and keep loyally to the plot.

“I was simply not happy with the approaches from America. I was worried what might happen to my story and my characters.”

Hislop is no doubt mindful of the fate of Captain Corelli’s Mandolin by Louis de Bernieres, a wartime novel set on the Greek island of Cephalonia, which was filmed in 2001 by John Madden, the British director.

In the hands of Universal, the US studio, Nicolas Cage and Penelope Cruz were considered miscast as a captain in the Italian army and his Greek girlfriend.

De Bernieres later remarked: “It would be impossible for a parent to be happy about its baby’s ears being put on backwards.”

The Island tells the tale of Alexis Fielding, who goes in search of her Greek mother’s past, uncovering tragedy and passion. The TV adaptation will employ about 300 local actors and is expected to cost £3.5m — despite the country’s economic meltdown.

The writer, who owns a house on Crete with her husband, Ian Hislop, editor of Private Eye magazine, will even have a small speaking part in the drama. “I’ve been learning Greek for the past couple of years,” she said. “I’m fairly fluent now.”

She also said the deal did not preclude secondary rights being sold to a British film or TV company at a later date.
 

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Ancient skeleton shows leprosy may have spread to Britain from Scandinavia
Date:
May 13, 2015
Source:
University of Southampton
Summary:
Archaeologists have found evidence suggesting leprosy may have spread to Britain from Scandinavia. The team examined a 1500 year old male skeleton, excavated at Great Chesterford in Essex, England during the 1950s.

http://www.sciencedaily.com/releases/2015/05/150513145507.htm
 

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Cutbacks in leprosy research could cost an arm and a leg in the long term.

Leprosy, a much feared and stigmatized scourge in history, affects a tiny number of Americans, but Congress’s decision to make a modest cut to its annual budget for care and research will have an outsize negative impact, leaders in the field warn.

About 3300 people in the United States need care for leprosy, also known as Hansen disease, which can damage nerves and the eyes, discolor skin, and cause disfigurement if untreated. Although antibiotics can clear the infection with Mycobacterium leprae, the causative bacterium, U.S. clinicians often have difficulty diagnosing this rare and confusing disease. As a result, patients sometimes do not receive proper diagnosis and care until they suffer from paralysis, blindness, clawed hands, and a collapsed nose.

The World Health Organization estimates that about 200,000 people globally still suffer from the disease, with the majority of new cases in Brazil and India. The United States has fewer than 200 new cases a year, the majority of which are locally acquired. Many are thought to occur because of transmission from armadillos, which live in southern states and are naturally infected with M. leprae. The exact route of transmission from armadillos to humans is not well understood, but it may have to do with coming in contact with the animals or with soil that’s contaminated with their feces or urine.

http://www.sciencemag.org/news/2018...ly_2018-04-02&et_rid=394299689&et_cid=1947428
 

AlchoPwn

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Hint: Don't buy your girlfriend a leper skin bikini. Incidentally, Lepers do change their spots, then they flake off.

More seriously, isn't it great that leprosy can now be cured?
 

Lord Lucan

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One of the saddest sights I've seen was a man with leprosy on the streets of Jakarta, Indonesia. Horrendously disfigured facially by the disease, he had also lost all of his fingers and toes. Dressed in torn and tattered clothes and unable to walk, he was dragging himself through filth alongside a very busy street.
Many years on I've never forgotten the image of this man and wonder from time to time if his lot in life ever improved. I somehow think not.
 

ramonmercado

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Now chimps have it, any pause in research could result in loss of paws.

Conservation scientist Kimberley Hockings was worried. In 2017, photos from camera traps in Guinea-Bissau’s Cantanhez National Park, where she works, revealed several chimpanzees with terrible lesions on their faces.

Hockings emailed wildlife veterinarian Fabian Leendertz. “I have NEVER seen this in chimps,” Leendertz, who works at the Robert Koch Institute in Berlin, wrote back. Then a few months later, Leendertz saw a similar photo from his own research site in Ivory Coast, hundreds of kilometers away. Could it be the same disease?

Now, a new preprint by the two researchers gives a surprising answer: Chimps in both West African sites suffer from leprosy, a disease never before documented in wild chimpanzees. The strains in each park appear unrelated, and they are unlikely to have come from contact with humans, the authors argue. The finding could indicate an unknown source of leprosy in the wild and reveal new clues about a still-mysterious disease. ...

https://www.sciencemag.org/news/2020/11/leprosy-ancient-scourge-humans-found-assail-wild-chimpanzees
 

Lb8535

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In the US, 200 cases a year is way more than plague (about 4 cases a year) and we make a big deal about plague. You'd think both the caring left and the religious right would combine support on funds for lepers.
 

Kondoru

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Its no longer fashionable.

(did i read somewhere that most people are naturaly immune to Hansens diesease?)
 

lordmongrove

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Just an aside, I'm pretty sure that she is the mortician from "Ask a Mortician". Very good show. Online, I should add.
Yes she is. Her name is Caitlin Doughty. She is really interesting and utterly gorgeous too.
 

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There are several active UK based charities who provide hospital services and rehab plus encouraging training and work prospects for people recovered from leprosy. I support https://www.nlt.org.uk/ who work in Nepal, and hope to visit Lalgadh hospital on my next visit to the country.

Leprosy's still much misunderstood, globally, and far from being a disease of the past is still affecting many lives now. A 6 month course of 3 x cheapish antibiotics (often supplied by the WHO free), decent wound care, good footwear (if feet are affected) and a nutritious diet is the pretty simple answer to recovery. Unfortunately the really big problem with leprosy is the stigma, shame and plain ignorance of the truth of the condition on a global scale.
 
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Vardoger

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There are several active UK based charities who provide hospital services and rehab plus encouraging training and work prospects for people recovered from leprosy. I support https://www.nlt.org.uk/ who work in Nepal, and hope to visit Lalgadh hospital on my next visit to the country.

Leprosy's still much misunderstood, globally, and far from being a disease of the past is still affecting many lives now. A 6 month course of 3 x cheapish antibiotics (often supplied by the WHO free), decent wound care, good footwear (if feet are affected) and a nutritious diet is the pretty simple answer to recovery. Unfortunately the really big problem with leprosy is the stigma, shame and plain ignorance of the truth of the condition on a global scale.
Still remember the bible stories told in primary school.
 

Moth Twiceborn

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I learned a few things about leprosy by reading the Chronicles of Thomas Covenant.
 

Kondoru

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Yes, I bet that many learned what they know from that.

(Pretty lame Fantasy, IMHO)
 

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Still remember the bible stories told in primary school.

It's ironic that in all probability the diseases described as 'leprosy' in the good book comprised a variety of conditions, a minority of them only actually being leprosy itself, the name then inspired fear and shunning. The term was used as a catch-all until the more modern translations.
 

EnolaGaia

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Leprosy has now been confirmed in wild (as opposed to captive) primates for the first time.
Leprosy identified in wild chimpanzees for the first time

The disease was previously unknown in wild non-human primates.

Scientists have detected leprosy in wild chimpanzees for the first time, and the symptoms resemble those in infected people.

A team of researchers recently found leprosy-infected chimps in unconnected populations in two West African countries: Guinea-Bissau and the Ivory Coast. Facial lesions in several of the animals looked like those in humans with advanced leprosy; genetic analysis of the chimps' stool samples confirmed that animals in both groups were carrying Mycobacterium leprae, bacteria that causes the disfiguring disease, according to a new study.

Not only are these cases the first to be detected in wild chimpanzees (Pan troglodytes verus) — leprosy in captive chimps has been reported previously — they are the first known non-human cases of leprosy in Africa. ...

Prior to this study, "nothing was known at all about leprosy in wild primates," said lead study author Kimberley Hockings, a senior lecturer in conservation science at the University of Exeter's Centre for Ecology and Conservation in the United Kingdom.

"There were published reports of captive primates, including chimpanzees, with leprosy," Hockings told Live Science in an email. "But the source of infection was unclear, as it is possible that they contracted leprosy whilst in captivity." ...

Humans are the bacteria's main host, but nine-banded armadillos (Dasypus novemcinctus) in the Americas and red squirrels (Sciurus vulgaris) in the U.K. are known reservoirs for leprosy-causing bacteria. While it's unknown how the chimps encountered M. leprae, the new findings suggest that strains of this bacteria may be circulating more widely among wildlife than previously thought ...
FULL STORY: https://www.livescience.com/leprosy-in-wild-chimpanzees
 

EnolaGaia

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Here are the bibliographic details and abstract of the published (open access) research report. The full report can be accessed at the link below.


Hockings, K.J., Mubemba, B., Avanzi, C. et al.
Leprosy in wild chimpanzees.
Nature (2021).
https://doi.org/10.1038/s41586-021-03968-4

Humans are considered as the main host for Mycobacterium leprae, the aetiological agent of leprosy, but spillover has occurred to other mammals that are now maintenance hosts, such as nine-banded armadillos and red squirrels. Although naturally acquired leprosy has also been described in captive nonhuman primates, the exact origins of infection remain unclear. Here we describe leprosy-like lesions in two wild populations of western chimpanzees (Pan troglodytes verus) in Cantanhez National Park, Guinea-Bissau and Taï National Park, Côte d’Ivoire, West Africa. Longitudinal monitoring of both populations revealed the progression of disease symptoms compatible with advanced leprosy. Screening of faecal and necropsy samples confirmed the presence of M. leprae as the causative agent at each site and phylogenomic comparisons with other strains from humans and other animals show that the chimpanzee strains belong to different and rare genotypes (4N/O and 2F). These findings suggest that M. leprae may be circulating in more wild animals than suspected, either as a result of exposure to humans or other unknown environmental sources.

SOURCE / FULL REPORT: https://www.nature.com/articles/s41586-021-03968-4
 
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