Prisca, 13, on the banks of the Zambezi river CREDIT: Simon Townsley
Cloaked in white robes, chanting worshippers sink into Zambia’s Kafue river with arms stretched to the sky as their baptism unfolds. But underneath the water’s rippling surface lurk parasitic worms, hunting for their next victim.
Trematode worms are endemic across this region. After being released by freshwater snails they search for a human host, and burrow into the skin. Once in the bloodstream, the parasites travel through the host’s organs, with potentially fatal consequences.
Across sub-Saharan Africa, the World Health Organization estimates that 56 million women and girls are infected by the parasite, which triggers a disease called female genital schistosomiasis (FGS) – known colloquially as bilharzia or snail fever.
People from Lusaka prepare for a baptism on the Kafue river CREDIT: Simon Townsley/The Telegraph
In women, the parasites lay eggs in the cervix, which block the fallopian tubes and cause infertility or ectopic pregnancies. The disease can also be deadly: it causes lesions which increase the risk of contracting HIV four-fold, and victims can develop cervical and bladder cancer.
Worldwide and across both sexes, it causes 280,000 deaths annually and has a burden of 3.3 million years lost due to ill-health, disability or early death.
FGS is a treatable disease – but in Zambia, poor education, stigma and misunderstanding among the public and medical professionals alike mean many suffer in silence.
Planorbidae snails, the intermediate host
for parasite responsible for schistosomiasis
CREDIT: Simon Townsley/The Telegraph
At the Kafue river, the congregation gathers on the dense river banks. They know this water is rife with the disease, but believe they are protected.
“It cannot touch us as we have come for prayers,” says the group’s leader, who has a large red cross painted over her white cloak. “We have got protection from God.”
The congregation travelled an hour south from Lusaka, Zambia’s capital, by minivan for the baptism. But for millions, interacting with the infected water is part of their daily routine.
Infested pools of water, lakes and slow-moving rivers are vital for washing clothes and cooking utensils, fishing, and bathing.
The bridge connecting Zambia and Zimbabwe over the 'Boiling Pot' pool at the foot of Victoria falls CREDIT: Simon Townsley
In Maramba, a neighbourhood in Livingstone – home to the famous Victoria Falls – 39-year-old Moono Simushi was diagnosed with bilharzia earlier this year. She tells the Telegraph that she caught the disease from a contaminated pool of water near her house, and worries it will lead to complications later on in her life.
“My water supply was closed because I could not pay for it,” she says. “There is a pipe leakage at a nearby house. It has made a puddle where I go to wash my clothes and plates, I also collect it for bathing. But I don’t have an alternative source of water.”
Moono Simushi, 39, who was diagnosed with female genital schistosomiasis in January CREDIT: Simon Townsley/The Telegraph
“My first born had bilharzia four years ago,” Ms Simushi adds. “He was passing blood in his urine. He liked to play at the stream, I suspect that’s where he got it. He was treated but other kids still play there.”
Children regularly contract the disease in Zambia, health experts say. In some of the country’s hotspots, adolescents are given a yearly preventative course of praziquantel, a form of chemotherapy which kills the worms, as per WHO advice. At present, there’s no vaccine against it.
“Suffice to say, it is a big problem,” says Dr Precious Kaubula, a technical lead at the WHO in Zambia. “The fact that there’s a preventive programme for school-aged children signals that the situation in Zambia is not good.”
In April this year, an outbreak was declared at a school in Chirundu. Approximately 150 children tested positive and 500 were treated. Health officials have not confirmed how the children caught bilharzia or when, but a local nurse says: “Children are naughty, they play in the river.”
The school backs on to the Zambezi, the fourth-longest river in Africa which snakes across the border with Zimbabwe.
A boy collects water from the Maramba River, which contains the parasite leading to schistosomiasis CREDIT: Simon Townsley
Ruth, a fisherwoman, watches her six-year-old daughter Chasline, and four-year-old son, Bongo, wash bowls and plates in the river as she describes the outbreak.
“They caught it from this water,” she says. Regardless, she is reliant on the Zambezi for survival, and by dusk has hooked eight small fish to feed her family.
‘Bark mixed in porridge’
FGS is one of the most neglected reproductive health diseases in sub-Saharan Africa, says Prof Amaya Bustinduy, who teaches at the London School of Hygiene and Tropical Medicine and treats the disease in Zambia
“In Zambia there is a lack of diagnostics available in clinics and in the community for FGS,” says Prof Bustinduy.
Kasika Mkwakti, the head nurse at Maramba’s clinic, a bilharzia hotspot area, admits her team had not heard of the disease before 2020.
Kasika Mkwakti, a nurse at Maramba Clinic in Livingstone CREDIT: Simon Townsley/The Telegraph
“We have only known about FGS for two years now so we’re missing many cases,” Ms Mkwakti says. “When we do examinations, we see eggs of schistosomiasis in the blood. It is a big problem with big complications – infertility, cervical cancer. It presents like an STI and it is a long period for symptoms to start showing.”
While FGS can be cured if caught early, lesions cannot heal if left untreated for a long time, meaning the increased risk of catching HIV remains.
Her team is now ramping up testing and treatment, going door to door to reach those who could be at risk.
Ms Mkwatki says that in doing so, the team has found the area has a high rate of cervical cancer. “Last month we screened 48 women and one had cervical cancer,” she says.
Dr Mubita, a 'witch doctor' and traditional healer
who is often consulted on medical matters including
schistosomiasis CREDIT: Simon Townsley/The Telegraph
The shame of thinking FGS is a sexually transmitted disease is a major barrier for accessing treatment, and some women turn to witch doctors for treatment instead.
Dr Mubita, a traditional healer since 1974, advertises a cure for bilharzia – along with HIV, herpes, epilepsy, diabetes – on brightly coloured posters around Livingstone. At his home, he holds up a pink powder for bilharzia in children and men, saying “a pinch of this in a drink” will treat the disease in a matter of weeks.
Dr Mubita has prescribed tree bark to treat
schistosomiasis CREDIT: 2022 ©Simon
Townsley Ltd/Simon Townsley
He hands out a small piece of bark for FGS. “You boil the bark, drink it or chew it, it’s bitter,” he instructs. To collect the bark, he travels 150km away to find Mulya trees – he insists it’s not poisonous.
Symptomless, stigmatised and misunderstood
“Most people go to the hospital,” he says. “But a woman visited me an hour ago for it, I gave her medicine to take with porridge for a month.”
Dr Kaubula, of the WHO, says that although less common than it once was, the use of traditional healers is still rampant across Zambia – especially in rural areas. “It is a cultural issue. Before when someone got sick, they would go to the traditional healers,” she says. “It is only now that they are starting to go to the clinic.”
Most people do not realise they have bilharzia at first – symptoms can take years to develop. When they do appear, patients experience itchy red bumps where the worms burrow, fever, diarrhoea and muscle aches. Some urinate blood and have genital pain.
FGS sufferer Eunice Mweetwa, at the river where she thinks she contracted schistosomiasis CREDIT: Simon Townsley
Eunice Mweetwa, aged 30, was diagnosed with the disease four days before speaking to the Telegraph, after community health workers travelled to her village with testing kits.
“I had pain when I urinated,” she says. “But I thought the pain was related to my period.” Ms Simushi has HIV and takes daily antiretroviral therapy (ART), which requires regular visits to the clinic. A large poster for FGS hangs by the entrance, showing yellow eggs embedded in the cervix, grainy sandy patches and rubbery papules.
Even so, Ms Simushi was not aware of the symptoms women experience: “I did not know I had it, I didn’t urinate blood, but my urine was a yellow colour. And I felt itchy and had a white discharge.”
“Most people are not open, they will not speak about such things.
Women fish on the banks of the Zambezi river
CREDIT: Simon Townsley/The Telegraph
People suffer inside,” Ms Simushi adds.
“Women confuse FGS with a sexually transmitted infection – but it is not one. There is very little awareness of it. People know about bilharzia generally as it gives you red urine, but they do not know about genital manifestations,” Prof Bustinduy says.
Most locals spoken to are unaware that the disease can cause infertility or increase the risk of HIV and cervical cancer.
Plagued by waterborne disease
Down by the stream where the snails – which release the parasites – can be found, two young women, Evelyn and Miriam, fill buckets of water for the fourth time that day.
“I did not know it can cause cervical cancer or infertility or increase HIV,” Irene says. Miriam adds she has never been taught about FGS, but believes it can transfer directly from one person to another – which it cannot.
A girl drinks clean water, for which she has paid, at a standpipe in the Kanyama compound CREDIT: Simon Townsley/The Telegraph
Bilharzia is just one of many waterborne diseases in Zambia. “In the past five months, Zambia has recorded a number of cases – including typhoid fever, cholera, dysentery, high numbers of e-coli induced diarrhoea. We have had to add more cholera hotspots to our list,” says Dr Kaubula, of the WHO.
“We cannot run away from the fact that limited access to clean water in Zambia is leading to these diseases. This is how critical clean water accessibility is.”
WaterAid, an NGO with a base in Zambia, says 6.4 million people – a third of the country’s total population of 18 million – are without access to clean water, and more than 2,000 children under five die every year as a result.
One of the cholera hotspot areas is the informal settlement Kanyama, the largest compound in the capital, home to approximately 400,000 people. It does not have a sewage system and locals have to jump to avoid the pools of water swamping the streets. The area is crowded and destitute. Young drunk men needle one another.
Girls carry drinking water from a well in Kanyama
CREDIT: Simon Townsley/The Telegraph
Small children squeal as they thread a plastic bag through the tail of a dead rat. A barefoot toddler chews on a jagged tin.
A bucket of clean water costs 15 kwacha, roughly 70p, but most locals also rely on uncovered wells and groundwater for washing, or when the tap is closed.
An open water well in the Kanyama
compound, which gets contaminated with
sewage when the area floods
CREDIT: Simon Townsley/The Telegraph
This water isn’t treated and is littered with waste. While carrying a bucket of this water on her head, water spills over a young girl’s face and into her mouth. She licks it away.
The area regularly floods and the sewage from pit latrines contaminate the open-water wells. “Our water gets mixed up with faecal matter,” says John Dhiri, a 65-year-old who lives in Kanyama.
Mr Dhiri explains that 37 families use one hole in the ground as a toilet. “We are crowded. We are used to cholera, it happens a lot. Life is difficult. You will have vomiting and diarrhoea and be in pain,” he adds.
A cholera outbreak was declared in April this year but quickly brought under control. A widespread vaccination campaign four years ago is said to have provided much protection, but there are fears the vaccine efficacy – which typically lasts for two to three years – could be waning.
Josephine, a 20-year-old and mother of two, lifts up water from the open water well outside her home in Kanyama CREDIT: Simon Townsley/The Telegraph
“Whilst the vaccination programme has proven essential, access to clean water is also fundamentally important,” says Pamela Chisanga, the Zambia Country Director of WaterAid.
“Any life lost from a waterborne disease is a tragedy. Increased investment in water, hygiene and sanitation, coupled with vaccine rollout, is key to ensuring people live healthy lives free from disease.”
Zambia was re-classified as a middle-income country in 2013, yet the proportion of households living below the poverty line has decreased only marginally since 2010.
Eradication is achievable
Over 40 per cent of children suffer from at least three deprivations or more, including lacking nutrition, education, health, water, sanitation and adequate housing.
Unicef says the shift to middle-income status led to a downsizing of development programmes, while WaterAid says that economic progress has not been shared equally among Zambians.
It is possible to eradicate FGS. Japan and Tunisia are two countries that have successfully eradicated the disease, while the Caribbean Islands and Morocco have made good progress, too. Brazil, China, and Egypt are also actively targeting schistosomiasis.
Researchers say the key is to invest in snail control, improve access to clean water and continue providing preventive chemotherapy to school-children.
Raw sewage drains into the Maramba River CREDIT: Simon Townsley/The Telegraph
In Japan, sodium pentachlorophenate was sprayed extensively on at-risk areas, while some wetlands were drained and the river bottom dredged. Ditches around the rice fields were also cemented to destroy snail habitats. In one study, two US researchers found snail control typically reduces new bilharzia infections by 64 per cent.
Prof Amaya says that FGS must also be integrated in the medical curriculum and the national health systems across sub-Saharan Africa to speed up diagnosis and treatment. “It’s still not recognised widely,” she says.
Back in Maramba, Ms Simushi welcomed her free test and treatment – but it’s a short-term fix. Ms Simushi worries she, and her daughters, will contract the disease again soon. “Children still play in the stream. I am still using that pool from the dripping tap,” Ms Simushi says.
“I am afraid of developing cervical cancer. I am afraid for my teenage daughters, or if they become infertile. I have a four year old and I am worried she has it as well. Yes, I am scared.”