This article is part of HuffPost’s Project Zero campaign, a yearlong series on neglected tropical diseases and efforts to fight them.
UMA, Congo ― Snappily dressed Bafimbo Baudoin used to enjoy his appearance, walking proudly around his rural village in suits, sunglasses and colorful hats.
But that changed three years ago, when he began struggling to hide the growth in his groin area ― even with his jacket buttoned.
“Sometimes, I can’t walk properly, because the swelling blocks and hurts me,” the 62-year-old said, sitting outside a clinic near his home.
Although he still manages to eke out a living farming cassava, the ballooning of his scrotum due to a disease called lymphatic filariasis makes it difficult to work and to be seen in public.
Bafimbo Baudoin, who has elephantiasis, still dresses to impress. (Photo: Neil Brandvold/DNDi)
Baudoin’s condition, also known as elephantiasis, is caused by parasitic worms transmitted to humans through repeated mosquito bites. The parasites lodge in the lymph vessels, where they multiply for years. Blockages in the lymphatic system can then lead to extreme swelling in various parts of the body.
Over 1 billion people in 54 countries, especially in tropical regions, are at risk of elephantiasis. Approximately 120 million people were infected with the disease in 2000, according to the most recent data provided by the World Health Organization.
Although most victims have no outward signs of the illness, some 15 million people around the world experience the characteristic swollen limbs that can grow to giant proportions and become leathery and heavily creased ― like those of an elephant.
Baudoin has developed a more common symptom ― a hydrocele, or buildup of liquid around his testes. Testicular hydrocele afflicts 25 million men, yet it receives less attention.
Without proper care, elephantiasis can disable victims, prevent them from earning a living and isolate them from family and friends. In extreme cases, men have been known to rest their engorged testicles in a cart so they can walk.
Three female patients in Haiti display their swollen legs, a symptom of elephantiasis. (Photo: Maggie Steber/The Washington Post via Getty Images)
Over the past two decades, significant strides have been made in tracking and controlling elephantiasis in multiple countries around the world. But in tropical regions of Africa, especially the Democratic Republic of Congo, mapping and monitoring of the disease remains inadequate. Vast, poor and ravaged by decades of violence and political instability, Congo presents a myriad of logistical challenges for health workers and patients alike.
Almost 40 million Congolese, just under half the country’s population, are thought to be at risk of elephantiasis. Only 30 percent of them were treated with preventative medicines in 2015. There is no reliable figure for how many people are actually infected.
“I don’t think [we] really know the size of the problem,” said Dr. Belén Pedrique, a specialist in tropical medicine at the nonprofit Drugs for Neglected Diseases Initiative.
Uma residents stand outside a small clinic in the village. (Photo: Neil Brandvold/DNDi)
The people most at risk of developing elephantiasis tend to be the ones whose lives are already hard. They struggle to make ends meet in remote places with limited job prospects. They lack adequate health care and education. Baudoin’s village, Uma, is located in a forested region in the north of the country, a five-hour drive from the nearest city.
Even if people in Congo can get their hands on the available medications and participate in prevention efforts, these measures focus on stopping the spread of the disease to others, not curing patients. New and better treatments are needed to attack the parasitic worms growing within the body and to bring down the swelling of body parts. There is currently no effective way to reverse the disease’s disfigurement of legs and arms.
Baudoin has taken deworming pills that won’t destroy the adult parasites in his lymphatic system, but will kill off the next generation of parasites in his blood so that mosquitoes that bite him don’t pass the disease on to other people. The medication also won’t cure his hydrocele, which he said has destroyed his social life and damaged relations with his two wives.
“I don’t go out anymore,” he said, gesturing to the melon-sized bulge near his right thigh. “I’ve only come here today because I knew doctors were coming.”
There is one option: A hydrocele can be surgically removed. Unfortunately, Baudoin doesn’t have the $100 to pay for the procedure. He barely earns or grows enough to feed his family.
Two elephantiasis patients wait to meet with a traveling medical team in Uma. (Photo: Neil Brandvold/DNDi)
Counting the victims of elephantiasis is hard in part because they can be difficult to find. Some can’t leave their homes due to their severely swollen limbs or genitals, while others deliberately hide out of shame and widely held beliefs that the condition is caused by bad luck.
“The problem is the stigma and disability for people who cannot move,” said Dr. Pedrique. “They are hidden in their houses. You don’t see them in the village.”
That’s one of the reasons local volunteers in Congo and elsewhere are critical to the ongoing effort to fight this disease.
In 2000, WHO launched the Global Programme to Eliminate Lymphatic Filariasis, with the help of public health agencies, pharmaceutical companies and philanthropic donors. Vulnerable populations are given free or inexpensive deworming medications at least once a year over a period of several years. In Congo, the pills are handed out at no cost to people in places where the disease is endemic. Community volunteers go house to house in remote areas.
Another part of the strategy is to prevent infected mosquitoes from biting people. Insecticide-treated bed nets, which are typically distributed to protect against malaria, have proved effective in blocking transmission of elephantiasis as well. About 70 percent of homes in Congo have one of these nets, according to a recent survey.
While the current range of prevention and treatment methods takes years to produce results, success stories exist. In July, the Pacific island nation of Tonga became the latest country to show that eliminating elephantiasis is possible.
But in Congo and nine other Central and West African nations, there is an additional challenge. A different filarial infection called Loiasis, or African eye worm, is endemic in parts of those countries. One of the key medications used to fight elephantiasis can in some cases cause brain damage, coma or death in individuals infected with eye worm ― which has left some people scared to take the drug at all.
“The regimen in Africa is complicated because you have to check for all the co-infections,” said Pedrique.
Progress has been made elsewhere in sub-Saharan Africa. In April, Togo became the first such country to eliminate elephantiasis. But it seems unlikely that Congo and other nations will meet the WHO’s goal of eliminating the disease as a public health problem by 2020.
A doctor examines Baudoin for co-infections that could make it risky for him to take a drug used to fight elephantiasis. (Photo: Neil Brandvold/DNDi)
In the years to come, new drugs or different combinations of existing ones might prove more effective in combating elephantiasis. For now, experts are calling for additional international funding to increase certain mass drug distributions in Congo and other countries from once a year to twice a year.
That won’t end Bafimbo Baudoin’s suffering. Free surgery for his enlarged scrotum is basically his only hope of returning to a normal life.
“My wish is to have the money to get a doctor to fix this,” he said. “I feel so much pain and shame.”
Residents of Uma leave a community center following a meeting with traveling doctors. (Photo: Neil Brandvold/DNDi)
The Drugs for Neglected Diseases Initiative 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.
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Also on HuffPost
Lymphatic Filariasis
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)
