This article is part of HuffPost’s Project Zero campaign, a yearlong series on neglected tropical diseases and efforts to fight them.
AMAOBU, Nigeria ― When Ndidi Ekeanyawu’s husband saw her severely swollen legs, he would turn away.
“He gets angry with me when he sees my leg and says it puts him off me,” she said, gingerly raising her long skirt to show hardened scars covering legs twice their normal size.
The 37-year-old mother of two went to a traditional healer in Nigeria’s Imo state. The healer would make cuts all over the swollen flesh, then pour on a tonic that made her legs burn.
Someone from her village, Amadou, had told her the method worked, and she feared her husband’s rejection. So, despite the extraordinary pain, Ekeanyawu returned to the healer every fortnight for six years.
Ekeanyawu was suffering from a painful and horribly disfiguring disease called lymphatic filariasis ― commonly known as elephantiasis, because it can cause people’s limbs to grow, harden and fold like an elephant’s.
Ndidi Ekeanyawu paid a traditional healer every two weeks to drain the fluid from her legs. But she saw no improvement in her condition. (Photo: The Carter Center / R McDowell)
The disease is transmitted to and between humans by parasites carried by mosquitoes. Once in the body, the parasites turn into worms that block the lymphatic system, causing fluid to build up in the body’s lower limbs or genitalia.
Elephantiasis currently affects an estimated 120 million people worldwide, but 1.1 billion people living across 54 countries are at risk of contracting it.
Nigeria is one of the most affected countries in the world, withtwo-thirds of its 183 million people at risk.
But many victims don’t understand that this is a parasitic disease. Instead, they waste precious time and money on alternative therapies, including traditional remedies to try to drain or burn off the fluid and prayers to lift what some people consider a curse.
“For elephantiasis, when your limb begins to swell, in the early stages, it looks just like you have a bag of water on your ankle or lower leg,” said Frank Richards, a health expert working for The Carter Center, a U.S. nonprofit run by former President Jimmy Carter that works alongside the Nigerian health ministry to stop the spread of the disease in parts of this country.
“It would seem logical that you would do an incision and the water would come out, as though you were popping a balloon,” Richards explained. “That’s not the case, but still people go to traditional healers who are always ready to do an incision, or several incisions, at high cost.”
Ndidi Ekeanyawu's swollen legs are covered in cuts from the traditional healer. (Photo: The Carter Center / R McDowell)
Draining fluid from the limbs by making incisions is not something that even a trained surgeon could master.
“If you start cutting, you’re likely to also cut veins and arteries, and the blood starts pouring and you’re set up for getting infections,” Richards said.
Ekeanyawu’s fortnightly treatments were physically crippling, with the cuts leaving her so wounded she had to take a motorbike taxi home. But the disease took a greater emotional and financial toll on Ekeanyawu as the 4,000 Naira (roughly $10)treatments fortnightly mounted and the swelling showed no signs of going down.
“I complained to the doctor that I didn’t see any improvement, and he kept assuring me that I’d be well,” she said.
“My husband is not happy about this whole thing, both how much it costs and how it looks,” she added.
Richards said he has often seen “the social and economic disaster that results from people having a leg that swells four to five times its normal size” and plenty of rejection or divorces resulting from this deforming disease.
“Elephantiasis is one of the greatest causes of disability in terms of its crippling effect, but unmeasured are the depression and social stigma that go along with it,” he said.
“I’ve seen young, beautiful girls with a swollen foot, and you’ll see line after line of incisions of where they’ve gone to traditional healers and a story of: ‘My mother and father have spent everything they could so that I can get married and have a normal life, and nothing worked.’”
Once the worms have stretched the lymphatic vessels and fluid has rushed to the lower limbs, causing swelling called lymphedema, there is no way of reversing it. If fluid builds up around the groin, forming a swelling called a hydrocele, it can be removed with surgery.
A man in Nigeria with severe elephantiasis. (Photo: The Carter Center / T Saater)
The only way to stop further swelling is to take yearly doses of deworming drugs that kill the baby worms and phase out the parasite as the adults die off, usually after four to six years.
“Once the lymphatic system has been destroyed, treating at that point will have little impact, so the purpose is to prevent progression to elephantiasis” by catching cases early, Richards said.
Mass distributions of mosquito nets and preventative drugs in highly at-risk communities help stop the disease from spreading.
Efforts to bring medicines to everyone in at-risk areas of Nigeria have been carried out since 2000. Organizations like The Carter Center work with the government and community volunteers to get these medications, which are donated by international pharmaceutical companies, to the right people.
In October, The Carter Center announced that two Nigerian states with particularly bad elephantiasis problems had managed to eliminate the disease as a public health problem. Earlier this year, Togo became the first sub-Saharan country to fully eliminate the disease within its borders.
Dr. Frank Richards, director of the Carter Center's lymphatic filariasis program, examines Ndidi Ekeanyawu's legs at a health clinic. (Photo: The Carter Center / R McDowell)
But there is much work still to be done around the world, and it will require governments, donors and drug companies to do their part.
“If the international community can’t come up with 20 percent of the cost to have such a major impact on such an age-old condition that we can do something about, then we will have a huge tragedy that will go down in the annals of history of not caring for our fellow mankind,” Richards said.
“The next generations, ad infinitum, should not have to worry about swollen legs and elephantoid changes that are so terrible to behold.”
Ekeanyawu’s chance meeting with doctors from The Carter Center, who were visiting a neighbor with elephantiasis, finally put an end to six years of trauma and confusion over her condition. They took her to a clinic with her two daughters to get examined and receive the right drugs.
“This has really affected my life, physically and emotionally,” she said. “Now, I will make sure my daughters take these medicines.”
The Carter Center is a recipient of grants from the Bill & Melinda Gates Foundation, which also partly funds Project Zero. 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.
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)
