An image from the pamphlets volunteers use in Nampula, Mozambique, to educate people on neglected tropical diseases. (Photo: Malaria Consortium)
This article is part of HuffPost’s Project Zero campaign, a yearlong series on neglected tropical diseases and efforts to fight them.
For people suffering from painful diseases in remote parts of the world, neighbors volunteering as health educators can be their best shot at getting help.
Ordinary people, without any formal medical training, have stepped up to teach others about common illnesses in the province of Nampula, Mozambique, which has one of the highest rates of neglected tropical diseases in the country ― but where many people live in remote, rural communities, far from any health centers.
As part of a pilot program from the nonprofit Malaria Consortium and the ministry of health, about 150 volunteers have been trained since 2014 to hold monthly “community dialogues” in villages, gathering large groups of people to talk about neglected diseases. They discuss how to recognize symptoms and when and where to seek treatment, often handing out pamphlets with illustrations depicting the diseases, since not all people in the area are literate.
“These diseases are affecting rural, removed communities with low education levels and where poverty is huge,” Sandrine Martin of Malaria Consortium told The Huffington Post. “In some provinces, you can have up to 80 percent of people who have these diseases, and people are usually infected with several at once.”
These are illnesses such as schistosomiasis, which can lead to blood in the urine or stool and, in severe cases, kidney failure or bladder cancer, killing 20,000 people worldwide each year. Elephantiasis is also common in the area, and can cause swelling in the legs and genitals, leading to pain, disability and social stigma.
“These diseases affect more than half of people who live here,” volunteer Anivel Adriano Haueque, from the Mogovolas district in Nampula, told HuffPost. “I know a man who has swelling in his arm and scrotum from elephantiasis ― he has a lot of trouble doing normal tasks in his everyday life.”
Volunteers with Malaria Consortium's pilot program leading a community dialogue in Nampula. (Photo: Malaria Consortium)
Both schistosomiasis and elephantiasis are part of a larger group of 18 illnesses dubbed neglected tropical diseases, which don’t receive wide global attention or resources, largely because they affect the poorest populations of the world.
Schistosomiasis, for instance, is transmitted by parasites in water, so it tends to strike poor, rural communities that lack access to safe drinking water and sanitation.
“They get it as kids bathing in water,” Martin said. “The symptoms, like blood in the urine, only develop later, so people tend to hide it because it’s in the genital area.”
Because for some of these diseases, symptoms develop years after the initial infection, it is common for folklore to develop around the original cause.
“For schistosomiasis, some believe that it can come from your mother having sex while she was breastfeeding,” Martin said. “For elephantiasis, some think it’s some kind of spirit, that someone put a spell on their family.”
Elephantiasis can cause severe swelling in the scrotum, leading some to believe it is a sexually transmitted disease, when actually it is spread by mosquitoes.
“They’re trying to make sense of things they don’t understand,” Martin added, “which is understandable.”
Part of what volunteers do is dispel myths of how these diseases are developed and discuss the real causes, so people can avoid getting them.
“If you think what you have has nothing to do with health, but is from a spell, you go to a traditional healer,” Martin said. “But with these community dialogues, people realize they have a disease that can be treated, and it generates a shift from healers to health centers.”
An image from the pamphlets volunteers use in Nampula to educate people on neglected tropical diseases, in this case lymphatic filariasis -- commonly known as elephantiasis. (Photo: Malaria Consortium)
Other similar “village health teams” ― organized, trained and at times paid by local governments ― exist in countries throughout Africa. In Mozambique, these groups have existed since 2010, Martin told HuffPost, but they have focused on educating and treating people affected by more deadly diseases, such as pneumonia, malaria and diarrhea ― illnesses that aren’t considered to be neglected.
This means that Mozambicans battling less deadly, but often debilitating neglected tropical diseases were being left behind. The program in Nampula was created to change that. However, a lack of funding for neglected diseases has meant that these volunteers ― unlike those fighting malaria or diarrhea ― don’t have easy tools to diagnose or treat patients on-site, away from medical centers. Their role is limited to simply informing people, and directing them to get professional help.
“What we do with community dialogue, is to say: This disease can be treated, it can be prevented,” Martin said. “That motivates people to seek care at health facilities.”
An image from the pamphlets volunteers use in Nampula. (Photo: Malaria Consortium)
The Malaria Consortium pilot program for elephantiasis is still being evaluated, but the one for schistosomiasis seems to be working so far: After a year and a half, an evaluation of 700 households found that it increased knowledge of symptoms by 12 percent and of how the disease is acquired by 10 percent.
The successes of the program also appear in more visible ways: After people in one area realized schistosomiasis was transmitted by infected water, they made sure each house in the community had a latrine, Martin said.
But volunteers still need far more resources to better help their communities.
“The people here need boots to be able to go into the river to clean and collect water without catching diseases,” volunteer Haueque said. “There aren’t any other sources of water here.”
After a few education sessions in his community, Haueque says, some people have stopped swimming and having fun in the river altogether, to avoid diseases.
More needs to be done at all levels, according to Martin: Donors need to commit more funds to fighting neglected tropical diseases; pharmaceutical companies need to invest in easy-to-use diagnostic tools and drugs for remote settings; and governments need to prioritize strategies to tackle these diseases, including investing in safe water and sanitation in poor communities.
“These are diseases of poverty,” Martin said. “When you don’t have latrines or safe water, you have to go to a river, and that’s when you get these diseases.”
Most important of all, according to Martin, is that the communities that are affected be involved in any new programs.
“Two years ago there was a cholera outbreak and health workers toured the district putting chlorine in wells,” Martin said. “They were attacked by community members who thought they were poisoning them. You need to use people from communities to make sure health interventions put in place are accepted by communities, that they become part of the solution.”
The Malaria Consortium is a recipient of grants from the Bill & Melinda Gates Foundation, which also funds HuffPost’s Project Zero series. All content in this series 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.
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.
Onchocerciasis
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.
Chagas
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.
Dengue
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.
Human African Trypanosomiasis
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 don’t 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.
Leishmaniasis
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.
Trachoma
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.
Rabies
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.
Leprosy
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.
Schistosomiasis
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 it’s in the genital area.”
Chikungunya
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.
Echinoccosis
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.
Foodborne Trematodiases
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 WHO’s most recent global estimate.
Buruli Ulcer
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.
Yaws
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.
Soil-Transmitted Helminth
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, WHO’s Ashok Moo told HuffPost.
Taeniasis
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.
Guinea Worm
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.
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![Schistosomiasis is a chronic disease that causes gradual damage to internal organs. Symptoms include <a href="http://www.who.int/mediacentre/factsheets/fs115/en/" target="_blank">blood in urine</a>, 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 <a href="http://www.malariaconsortium.org/pages/who_we_are.htm" target="_blank" data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.malariaconsortium.org/pages/who_we_are.htm&source=gmail&ust=1480609103751000&usg=AFQjCNG03VPF1XL5zli4__XAjDWpDmBOvw">Malaria Consortium</a> in Mozambique, told HuffPost. “But the symptoms, like blood in the urine, only develop later ― and then people tend to hide it because it’s in the genital area.”](https://s.yimg.com/ny/api/res/1.2/9f9As.sw0iNn_ENR93iBhA--/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MA--/https://img.huffingtonpost.com/asset/5845a09e1700002500e7dd42.jpg)
