Many people in Rwanda—from rice farmers to children out for a swim—remain oblivious to the dangers of bilharzia, a disease caused by a parasitic worm found in freshwater. An awareness drive aims to keep them safe.
Rice farmers are vulnerable to bilharzia due to spending a lot of time by the water.
Photo: Simon Fanger
In Huye, one of the eight districts that make up Rwanda’s Southern Province, an estimated 59% of the population is at risk from bilharzia—or schistosomiasis, according to the Rwanda Biomedical Centre. Caused by a parasitic worm that lives in freshwater, bilharzia is one of the most prevalent water-based diseases in the tropics, with its impact in many countries in sub-Saharan Africa second only to that of malaria. In Rwanda alone, about four million people out of the nearly 13 million population are at risk, including about 1.6 million children.
Dependent on freshwater for agriculture, domestic needs, and recreational activities, the people of Huye are regularly exposed to contaminated water. Children are especially vulnerable to infection due to lack of hygiene and pastimes like swimming and fishing.
Despite the high incidence of bilharzia, many residents of Huye say they don’t know anyone with the disease or the associated dangers of chronic ill-health and permanent organ damage.
An estimated 240 million people worldwide are infected with bilharzia and around 200,000 people die from it each year.
A campaign to increase awareness of the disease and provide effective treatment to the people of Huye is part of a larger effort to eliminate bilharzia as a public health problem in Rwanda by 2024.
A source of livelihood and disease
The symptoms of bilharzia, caused by the body’s reaction to the worm’s eggs, include abdominal pain, diarrhoea, and blood in the urine or stool.
Chronic bilharzia can cause anaemia, abdominal swelling, shortness of breath, seizures, and dizziness. Liver enlargement is common in advanced cases and frequently associated with an accumulation of fluid in the abdomen and hypertension of the abdominal blood vessels. In such cases there may also be enlargement of the spleen.
According to the World Health Organization (WHO), the disease disables more than it kills, reducing children’s ability to learn and people’s capacity to work. An estimated 240 million people worldwide are infected with bilharzia and around 200,000 people die from it each year.
Angelique Uwamahoro, a mother of two children who lives in Kubutare village near Huye’s Ndobogo swamp, a local freshwater source, understands there are risks involved with the water. "Our children bathe in pond water and swim in the swamp,” she says. “During the rainy season, they play with water insects, and you feel that they are infected with [some kind of] intestinal worms.”
When asked if she knows about bilharzia, she says, "I have not seen anyone with the disease, [but] in our village many children may have it because they are bloated, and there are also those who claim to be suffering from poison.”
Likewise, Innocent Nsanzimana, a 50-year-old farmer, is unfamiliar with the disease. He says it is hard to avoid the swamp because so many people depend on it for their livelihood. “It's difficult if the disease spreads from dirty water—we are rice farmers in Ndobogo swamp and we spend the whole day pacing in that water.”
He says many children collect water from the swamp for their families as they cannot afford to pay for water from a shared public source. “This village has many poor people, so it is difficult for them to draw water from the public source,” Nsanzimana says.
At the swamp, one of the young people pumping dirty water from it explains, “This water is not for domestic use, but construction activities. I’m taking it to work because I want to save money to buy new clothes and shoes for Easter,” he says, explaining that his parents do not have the means to buy them for him.
Bilharzia spreads from dirty water and farmers are at high risk of infection.
Raising awareness from the ground up
A medication called praziquantel is the recommended treatment for bilharzia. A partnership between Merck and the END Fund helps deliver eight million additional praziquantel tablets to Rwanda each year.
Rukira, a sub-district of Huye that includes Ndobogo swamp, has been selected for the distribution of the drug as part of a programme administered by the Rwanda Biomedical Centre.
"In November 2022 the Rwanda Biomedical Centre provided us pills to give to people in our village, because we are surrounded by swamps where children live,” says community health worker Emmanuel Bizimana. “We distributed the pills according to the height of each person.”
The distribution of praziquantel pills has been accompanied by an education drive to raise awareness on bilharzia and the ways of preventing it, says Christine Umutoni, executive secretary of Rukira. “We are running a campaign to encourage our people to take care of hygiene and sanitation in order to adequately protect themselves from bilharzia.”
Jean Bosco Mbonigaba, acting director of the Neglected Tropical Diseases and Other Parasitic Diseases Unit at the Rwanda Biomedical Centre, says the campaign needs to be intensive as there is very little knowledge of bilharzia in rural areas of Rwanda.
"We are focusing on awareness in the community because a majority of people don’t have knowledge of bilharzia."
“Recently, we conducted a survey among children aged 5-15 in four districts in the Western Province,” he says. None of the children knew about bilharzia, he says. “Only one in 10 teachers, community health workers and nurses that administer praziquantel have comprehensive knowledge about bilharzia.”
An added difficulty in some Rwandan communities, such as Huye district, is dispelling the myth that the suffering is caused by a type of poison, rather than bilharzia.
“In Huye district, more than 60,000 kids and 123,000 adults are at risk of bilharzia, yet we have some people saying their kids have been poisoned by their neighbours.
“Some people may take their children not to the health centre but to traditional healers. Now we are working closely with local community health workers to inform people how they can prevent bilharzia,” Mbonigaba says.
Educating the health workers
Educating health workers in Huye and elsewhere in the country is the first step to improving awareness of bilharzia, Mbonigaba says.
“We are focusing on awareness in the community because a majority of people don’t have knowledge of bilharzia,” he says. “In 2018 we conducted training for community health workers in 30 districts of the country. We informed them about bilharzia and now they have a package of skills and knowledge about it.”
This work is especially important because knowledge of the disease is low even among health workers. The survey in Western Province found 90% of adults, including community health workers, nurses and teachers, had no prior comprehensive knowledge of bilharzia, despite many in the group undergoing training on the disease in 2018.
Bizimana, who attended the training, says, “We were trained and informed people… but it’s hard to change community behaviour and beliefs. For this, we will continue to mobilise our population.”
Community health workers now need to observe stricter protocols and issue stronger advisories to the community, such as asking children to inform their parents whenever they swim in freshwater.
Working towards elimination
Schools, too, are in focus for the training. The Rwanda Biomedical Centre plans to train one teacher and one headmaster in each school—an estimated 26,000 professionals across the country—on the risks of bilharzia, to help spread the information among their students.
"We expect to achieve our goal to end bilharzia in 2024. Our trained workers will educate the community door-to-door."
All of this is part of an ambitious countrywide goal to eliminate bilharzia by next year. “We expect to achieve our goal to end bilharzia in 2024,” Mbonigaba says. “Our trained workers will educate the community door-to-door. We also hold community discussions every week to inform people about this disease and other government targets related to neglected tropical diseases.”
Translating knowledge into action and helping people like the rice farmers of Huye balance the risks of bilharzia with the need to earn an income and manage a household is an important next step.
“The big challenge is with the rice farmers because they spend much time in contaminated water,” Mbonigaba says. “There is no farming boot for them or other clothes that can help them in their activities—this is something we’re advocating to relevant stakeholders.”