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Posted: 2017-05-23T09:01:14Z | Updated: 2017-05-23T14:05:00Z This Woman Lived In A Cave Without Health Care While A Parasite Ate At Her Face | HuffPost

This Woman Lived In A Cave Without Health Care While A Parasite Ate At Her Face

People who came to visit me would be scared to see me."
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This article is part of HuffPost’s Project Zero  campaign, a yearlong series on neglected tropical diseases and efforts to fight them.

UTUT FOREST, Kenya For Hellen Ruttoh Tarko, living in a cave for 16 years in a remote part of Kenya was bearable until a mysterious flesh-eating disease started taking over her face.

At night, she would lie awake and feel the wounds itching as the disease spread. In the remote area where she lives, this disease is considered a curse and is known as shetani, or devil. 

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Hellen Ruttoh Tarko lived in a cave for more than a decade. Her new home is made of grass and sticks.
Zoe Flood

Cutaneous leishmaniasis is a rare and neglected tropical disease transmitted to humans in the form of a parasite by the bite of bloodsucking sand flies that nest in the cracks of rocks and thrive in vast, arid bushland. Left untreated, it will gnaw away at the skin and, in severe cases, can consume the ears, lips and nose. There is a highly effective treatment available in Kenya, but people who live way out in the Utut Forest rarely have access to it.

There are no doctors in the community of several hundred people who live in caves in this forest, located in the heart of Kenya’s Great Rift Valley. The nearest village just a cluster of houses and huts is an hour’s hike through bush peppered with leopards, lions and buffalo. The nearest hospital, in the town of Gilgil, means hours more walking or a long ride on a minibus or motorbike, if you have the spare cash.

So Tarko, a 58-year-old who makes a pittance selling charcoal, did what everyone in her community does when they develop an unexplained illness in the absence of proper medical care: She followed the advice of folk healers.

But after an ineffective treatment, her angry-pink lesions kept growing until she became terrifying to look at. 

“People who came to visit me would be scared to see me,” said Tarko, a mother of three.

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Friends gather in a cave in Kenya's Great Rift Valley. People who live here are at greater risk of contracting cutaneous leishmaniasis because the sand flies that spread the disease tend to swarm in cool, rocky areas.
Zoe Flood

After years of suffering and one failed attempt to see a doctor, Tarko was eventually helped by a dedicated community health worker , one of the few people from government groups or non-governmental organizations who make the dangerous trek into the Kenyan wilderness to find people in need of care. He recognized her disease and persuaded her to go for treatment.

Cutaneous leishmaniasis is so neglected that it doesn’t have a specially formulated cure.

The rudimentary treatment Tarko received was originally designed to treat a fatal strain of leishmaniasis and involves dozens of injections of sodium stibogluconate and the antibiotic paromomycin straight into the affected area. Lesions from cutaneous leishmaniasis often develop on the face, so injections target highly sensitive areas, such as the nose, lips and skin around the eyes, and they cause agonizing pain.

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A man crawls out of the cave he has inhabited for decades in Kenya's Great Rift Valley. Several hundred people live in caves within the Utut Forest.
Zoe Flood

Traditional remedies, like the one Tarko was trying, usually involve scraping off lesions with sharp rocks, knives and machetes, and then packing the wounds with a crushed, burnt powder made from bitter leaves and fruits.

Though many patients abandon the painful injections before their lesions have completely healed, Tarko endured the full course. And she took her doctor’s advice about avoiding reinfection by leaving her cave home, since sand flies often swarm in such cool, rocky places. Earlier this year, she moved into an above-ground home made of grass and sticks.

She now has deep scarring across her cheeks, a reminder of the disease. And she still bears a small grudge for one of the disease’s main carriers, the hyrax , a small mammal that resembles a beaver or large guinea pig.

This critter is also a source of food in the area not just for people but for the sand flies that feed on blood. While hyraxes don’t suffer from cutaneous leishmaniasis, they help spread it to humans via the sand flies.

So now, once a week, Tarko goes out with a knotted piece of string to catch herself a hyrax. After a hunt, she comes home, fries up the hyrax and eats it for dinner, sometimes washed down with a glass of home brew.

Because, sometimes, revenge is a dish best served hot.

Zoe Flood contributed reporting. 

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Hellen Ruttoh Tarko shows how she catches rock hyraxes, small mammals that she eats for dinner once a week with her family.
Zoe Flood

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.

If you’d like to contribute a post to the series, send an email to ProjectZero@huffingtonpost.com. And follow the conversation on social media by using the hashtag #ProjectZero.

 

 

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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)