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Posted: 2017-12-08T14:33:22Z | Updated: 2019-02-10T16:06:39Z How Experts Fight A Disease When They Dont Know Whom Its Killing | HuffPost

How Experts Fight A Disease When They Dont Know Whom Its Killing

Melioidosis is thought to infect 160,000 people every year. Half of them dont survive.
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Diyana Kamalludden, 36, stands in front of a windbreaker belonging to her late husband, a cameraman who died from a little-known disease.
Joshua Paul for HuffPost

This article is part of HuffPost’s Project Zero  campaign, a yearlong series on neglected tropical diseases and efforts to fight them.

KUALA LUMPUR, Malaysia  Rostam Ramili was a battle-hardened cameraman who had cheated death in Iraq and walked among the ruins of quake-ravaged Nepal. He could not have possibly thought his end would come from filming a cookery program in his home country of Malaysia.

“War assignments were his favorite. He was never afraid,” said his widow, Diyana Kamalludden, sitting in front of their wedding photographs in a middle-class, residential area of the capital, Kuala Lumpur.

While on his domestic cooking assignment last May, Ramili helped colleagues to pull a root out of the ground. Perhaps it was through a scratch on his hand or maybe he inhaled some particles of earth, but somehow the bacteria that causes melioidosis, also known as Whitmore’s disease, invaded the 40-year-old cameraman’s body.

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Diyana looks at a digital portrait of her late husband, Rostam Ramili.
Joshua Paul for HuffPost

“When he came back, he was normal for days,” Diyana recalled. “Then my sister suddenly called me at work to say that he was vomiting and had a high fever, and was walking around the house like a zombie. When I came back home, he couldn’t even stand up and he was ranting and raving.”  

As another family member tried lifting him, Diyana noticed he’d lost an astonishing amount of weight. They called paramedics to rush him to the hospital. “I was driving behind, faster than the ambulance,” Diyana said.

Endemic but not exclusive to Malaysia, melioidosis typically affects farmers and construction builders. The disease’s agent typically lives under about a foot of soil or in contaminated water. Nicknamed the “great mimicker,” melioidosis has no specific symptoms and can easily be confused with other endemic illnesses such as dengue or leptospirosis, which also cause pneumonia, high fever, headache and muscle tenderness, as well as confusion and loss of weight as was the case for Ramili.

“When a patient has these symptoms, most doctors in Malaysia would take it for dengue and tell the patient to go home and wait,” explained Dr. Shih Keng Loong who works on melioidosis at the Tropical Infectious Diseases Research & Education Centre (TIDREC), part of the University of Malaya in Kuala Lumpur.

“Instead, identifying the illness as soon as possible is crucial, especially as the right kind of antibiotic needs to be used,” said Dr. Lee Hai-Yen, also at TIDREC. She cited meropenem, a broad-spectrum antibiotic used against a wide variety of severe infections, as the medicine of choice.

The unusual, life-threatening disease is believed to be a growing problem in Malaysia, and in the past it has been carried to other countries, including the United States. Experts fear it could spread, but cases are so underreported that getting a head start on the problem is difficult. Its actual prevalence is unknown. In Malaysia, for example, it is not mandatory to notify the authorities of cases.

A recent study estimated that 160,000 people are infected each year around the world and about half of them die. Malaysia has the world’s highest percentage of officially reported cases, along with Thailand and Singapore, where medical facilities are more developed than in other Asian countries.

The majority of recorded cases in Malaysia occur in the east of the country in areas such as the rural state of Pahang, near Kuala Lumpur. Strict guidelines for doctors were adopted in Pahang after the search for a drowning victim in 2010 resulted in eight fatalities. Victims fell ill with a rare co-infection of melioidosis and leptospirosis the latter is also spread through water and soil, but when contaminated with rat urine.

The danger emanating from soil is expressly reflected in Malay folklore. The saying “dibawah pokok ada hantu” literally means “Under the tree you’ll find ghosts,” while parents warn their children not to walk beneath trees without shoes or “somebody will steal them.”

“People don’t know why they get ill, but they come up with these sayings,” Lee said.

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The bacteria that causes melioidosis.
Smith Collection/Gado via Getty Images

Melioidosis affects animals especially farm animals and humans, but cases of infection from animals to humans are not known. Transmission between humans, including from mother to child, is rare but possible. The incubation period ranges from one day to two weeks and while the infection can remain localized, the chances of dying or of internal organs becoming damaged increase significantly once it enters the bloodstream.

This can lead to organ failure and septicaemia, which happens in 90 percent of cases in Malaysia versus 46 percent of cases in Australia, where early detection is more advanced.

Sufferers in Malaysis are also at a statistically higher risk of death, since a staggering 17 percent of the population has diabetes, which alters immune functions and can make patients less able to fight off deadly bacteria. 

“We didn’t know Rostam had diabetes. We discovered it in hospital, just before he died,” said Diyana, his wife of 10 years.

Men are most affected, accounting for 79 percent of cases in hospitals in the northeast of the country, perhaps due to working more in agriculture and construction jobs. People living in endemic areas, however, are believed to have higher immune protection than others, such as tourists, as small particles might have been inhaled over the years.

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Eco-tourists walk on canopy walkways in a rainforest in Pahang.
Eye Ubiquitous via Getty Images

However, Ramili’s death shows how new factors mean that a wider segment of the population  many of whom may have never heard of the disease are more likely to be exposed to the bacteria.

More people in Malaysia are spending their leisure time in rural areas, enjoying outdoor pursuits such as hiking or camping. TIDREC Director Dr. Sazaly Abu Bakar believes that changing environments can further exposure as palm oil plantations promote deforestation, he explained, more people enter previously untouched territory, exposing workers to contaminated elements.

The bacteria that causes melioidosis, which was first identified in 1912 among morphine addicts with a debilitated immune system in Myanmar, is extremely strong and can survive for up to six years in dry soil. Even more striking is the bacteria’s resistance inside the human body, where it can exist for up to 60 years before becoming symptomatic. This happened to U.S. soldiers who fought in Vietnam and brought the bacteria since labeled “the Vietnamese time bomb” back home with them.

Furthermore, the lack of a vaccine , the bacteria’s resistance to several strains of antibiotics, and the ease with which it can be sourced and released through air, soil and water all mean that melioidosis is considered by the U.S. Centers for Disease Control and Prevention as a possible source for biological weapons. A similar bacteria was used during the First World War by German secret agents to debilitate horses and livestock in the U.S., Romania, Spain, Norway and Argentina. The Soviet Union is also reported to have produced dry agents of the bacteria in the 1980s.  

“Creating a vaccine will be the next step,” said Lee, who with Shih is studying and developing tools to identify the two different types of bacteria that cause melioidosis.

The priority is now raising awareness, something that might have saved Ramili.

“I had never heard about melioidosis before,” Diyana said. Yet it took her husband’s life in a matter of days.

“I was so shocked that I had to give everything away, even his camera. I couldn’t bear looking at them. I couldn’t drive his car.”

“We were looking for a new house to rent and we had a plan to shoot a documentary together. But now it doesn’t make sense: I know I would look at somebody else’s work thinking it would be impossible to find a cameraman as good as him.”

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Diyana holds up her late husbands windbreaker.
Joshua Paul for HuffPost

This series is supported, in part, by funding from the Bill & Melinda Gates Foundation. All content is editorially independent, with no influence or input from the foundation. 

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Before You Go

Neglected Tropical Diseases
Lymphatic Filariasis(01 of18)
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Lymphatic filariasis, more commonly known as elephantiasis, is a leading cause of disability worldwide , according to the U.S. Centers for Disease Control and Prevention. It affects over 120 million people globally and can cause severe swelling of body parts, including the legs and scrotum. While people are usually infected in childhood, the painful, disfiguring symptoms of the disease only show up later in life . (credit:Drugs for Neglected Diseases initiative)
Onchocerciasis(02 of18)
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Onchocerciasis, commonly known as river blindness, is an eye and skin disease that can cause severe itching and visual impairment including blindness. Around 18 million people are infected . Of those, over 6.5 million suffer from severe itching, and 270,000 are blind. The disease is caused by a parasitic worm, transmitted through bites from infected blackflies. The worm can live for up to 14 years in the human body, and each adult female worm can be more than 1.5 feet long. (credit:ISSOUF SANOGO/AFP/Getty Images)
Chagas(03 of18)
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Chagas disease is a potentially life-threatening illness . In the first months after infection, symptoms are mild, including skin lesions and fever. But in its second, chronic phase, up to 1 in 3 patients develop cardiac disorders, which can lead to heart failure and sudden death. The disease is transmitted to humans by kissing bugs, which live in the walls or roof cracks of poorly constructed homes in rural areas, according to the World Health Organization. Of the estimated 6 million to 7 million people affected worldwide, most live in Latin America, but the disease has also spread to the United States. Around 300,000 people in the U.S. have Chagas disease, according to the Dallas Morning News . (credit:Nature Picture Library/Getty Images)
Dengue(04 of18)
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Dengue is a flu-like illness that can sometimes be lethal . In 2015, more than 2 million cases of dengue were reported in the Americas. In some Asian and Latin American countries, severe dengue is a leading cause of serious illness and death among children. Dengue is spread by the Aedes aegypti mosquitoes, the same type of insect that transmits Zika. To reduce the risk of bites, WHO recommends covering water containers, using insecticide, having window screens and wearing long sleeves. (credit:Fachrul Reza/NurPhoto/Getty Images)
Human African Trypanosomiasis(05 of18)
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Human African trypanosomiasis, commonly known as sleeping sickness , is a chronic infection that affects the central nervous system. People can be infected for years without signs, but in the second stage, patients can suffer behavior changes, hallucinations and even slip into a coma and die . Many people affected live in remote, rural areas that dont have easy access to quality health services. This makes diagnosis and treatment more difficult. WHO has identified sleeping sickness as a disease that could be eliminated worldwide by 2020 if the right resources are dedicated to it. (credit:MARIZILDA CRUPPE / DNDi)
Leishmaniasis(06 of18)
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There are several forms of leishmaniasis , including visceral, which can be fatal, with symptoms including fever and weight loss; and cutaneous, the most common form, which causes skin lesions, leaving lifelong scars and disability. The disease, spread by sandflies, affects some of the poorest people on earth, according to WHO, and is associated with malnutrition and poor housing. Around 1 million new cases occur annually, causing 20,000 to 30,000 deaths. Leishmaniasis is climate-sensitive, affected by changes in rainfall, temperature and humidity which means it could be exacerbated by global warming. (credit:Corbis Documentary/Getty Images)
Trachoma(07 of18)
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Trachoma is an eye disease, which if untreated, can cause irreversible blindness . It causes visual impairment or blindness in 1.9 million people, per WHO. The disease is present in poor, rural areas of 42 countries in Africa, Latin America, Asia and the Middle East but Africa is the most affected. (credit:STR via Getty Images)
Rabies(08 of18)
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Rabies is almost always fatal once symptoms show up. Initial symptoms are fever and tingling around the wound. As the virus spreads, people with furious rabies become hyperactive and die by cardiac arrest; people with paralytic rabies become paralyzed, fall into a coma and die. Transmitted by pet dogs, rabies causes tens of thousands of deaths every year. The disease is present on all continents except Antarctica but more than 95 percent of human deaths due to it occur in Asia and Africa. It is a neglected disease primarily affecting poor populations, where vaccines are not readily available. (credit:NOAH SEELAM/AFP/Getty Images)
Leprosy(09 of18)
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Leprosy is a chronic disease, which when untreated can cause permanent damage to the skin , nerves, limbs and eyes. There were 176,176 cases at the end of 2015, according to WHO. While the stigma associated with the disease means people are less likely to seek treatment, leprosy is curable, and treatment early on can avoid disability. Leprosy was eliminated as a public health problem in 2000 meaning there is now less than one case for every 10,000 people worldwide. (credit:Chandan Khanna/AFP/Getty Images)
Schistosomiasis(10 of18)
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Schistosomiasis is a chronic disease that causes gradual damage to internal organs. Symptoms include blood in urine , and in severe cases, kidney or liver failure, and even bladder cancer. Around 20,000 people die from it each year. Transmitted by parasites in infested water, the disease largely affects poor, rural communities in Africa that lack access to safe drinking water and sanitation. [People] get it as kids bathing in water, Sandrine Martin, a staff member for the nonprofit Malaria Consortium in Mozambique, told HuffPost. But the symptoms, like blood in the urine, only develop later and then people tend to hide it because its in the genital area. (credit:Malaria Consortium)
Chikungunya(11 of18)
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Chikungunya is a disease that causes fever and severe joint pain , according to WHO. While it is rarely fatal, it can be debilitating. Since 2004, it has infected more than 2 million people in Asia and Africa. There is no cure for the disease, which is transmitted to humans by infected mosquitoes. The name comes from a word in the Kimakonde language , spoken in some areas of Mozambique and Tanzania, that means to become contorted a nod to the hunched-over position of people who are affected with joint pain. (credit:Universal Images Group/Getty Images)
Echinoccosis(12 of18)
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Echinoccosis is a parasitic disease that leads to cysts in the liver and lungs. While it can be life-threatening if untreated, even people who receive treatment often have a reduced quality of life, according to WHO. Found in every continent except Antarctica, the disease is acquired by consuming food or water contaminated with tapeworm eggs, or through direct contact with animals who carry it, such as domestic dogs or sheep. (credit:Smith Collection/Gado/Getty Images)
Foodborne Trematodiases(13 of18)
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Foodborne trematodiases can cause severe liver and lung disease , and on rare occasions death. Most prevalent in East Asia and South America, the disease is caused by worms that people get by eating raw fish, shellfish or vegetables that have been infected with larvae. While early, light infections can be asymptomatic, chronic infections are severe.More than 56 million people were infected with foodborne trematodes, and over 7,000 people died in 2005, the year of WHOs most recent global estimate. (credit:Alexandre Tremblot de La Croix via Getty Images)
Buruli Ulcer(14 of18)
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Buruli ulcer is a skin infection caused by bacteria that often starts as a painless swelling, but without treatment, it can lead to permanent disfigurement and disability. In 2014, 2,200 new cases were reported, with most patients under age 15. The exact mode of transmission is still unknown. The majority of cases, if detected early enough, can be cured with antibiotics. (credit:ISSOUF SANOGO/AFP/Getty Images)
Yaws(15 of18)
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Yaws is a chronic, disfiguring childhood infectious disease . Affecting skin, bone and cartilage, the symptoms show up weeks to months after infection and include yellow lesions and bone swelling. More than 250,000 cases of yaws were reported from 2010 to 2013, WHO told HuffPost. A lack of clean water and soap for bathing contributes to its spread. Only 13 countries are known to still have cases of yaws, including Ghana, Papua New Guinea and Solomon Islands . (credit:BIOPHOTO ASSOCIATES via Getty Images)
Soil-Transmitted Helminth(16 of18)
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Soil-transmitted helminth infections are among the most common infections worldwide and affect the poorest communities. People are infected by worms transmitted by human feces contaminating soil in areas with poor sanitation. People with light infections usually have no symptoms. Heavier infections can cause diarrhea, abdominal pain, general weakness and impaired cognitive development. Depending on the number of worms, it can lead to death. Up to 2 billion people are infected worldwide, according to WHO. But because infections can be light, not all patients suffer, WHOs Ashok Moo told HuffPost. (credit:Malaria Consortium)
Taeniasis(17 of18)
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Taeniasis is an intestinal infection caused by tapeworms , which mostly causes mild symptoms, such as abdominal pain, nausea, diarrhea or constipation. But if larvae infect the brain, causing neurocysticercosis, the disease can cause epileptic seizures and can be fatal. People get it by eating raw or undercooked infected pork. The ingested tapeworm eggs develop into larvae and migrate through the body. Taeniasis is underreported worldwide because it is hard to diagnose in areas with little access to health services, according to the CDC. (credit:Science Source/Getty Images)
Guinea Worm(18 of18)
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Guinea worm is a crippling disease that it is close to being eradicated. There were only 22 human cases reported in 2015, according to WHO down from around 3.5 million cases in 21 countries in the mid-1980s. The disease is usually transmitted when people with limited access to quality drinking water swallow stagnant water contaminated with parasites. About a year after infection, a painful blister forms most of the time on the lower leg and one or more worms emerge, along with a burning sensation. It is rarely fatal, but can debilitate infected people for weeks. The Carter Center, founded by former President Jimmy Carter and his wife, has been instrumental in efforts to eradicate the disease. (credit:PETER MARTELL/AFP/Getty Images)