Aafter a year of debilitating pain, Penina Kitsao discovered what was really wrong with her after a routine checkup for something else. The farmer from Kilifi in eastern Kenya contracted female genital schistosomiasis (FGS) of the small parasitic worms in the pond that her family uses for all their water.
“I couldn’t do anything for weeks,” says Kitsao, a 33-year-old mother of four. “Doctors kept giving me the same pills every time I went to the hospital. They would suppress the symptoms for a few days, and then they would return even worse.”
FGS affects an estimated 56 million women and girls, mostly in sub-Saharan Africa Africa, but remains a largely unknown, neglected condition. Easily treated if diagnosed quickly, if left untreated it can lead to damage to the reproductive organ, infertility, and it is now associated with an increased susceptibility to HIV.
The water-borne parasite infects women and girls who, like Kitsao, live in rural areas and rely on the open water of rivers and ponds for cooking, cleaning, bathing and washing clothes. Kitsao
The parasites are hard to see, clear and reach between 1 cm and 2 cm in length. They burrow through the skin and travel through the bloodstream and lay eggs. Symptoms, including fever, pelvic pain, bloody discharge and itching, burning genitals, can be similar to those for sexually transmitted infections, leading to misdiagnosis.
There are no accurate figures on the number of women with FGS, as there is no standardized testing. According to research published in March, only 15,000 girls and women in endemic areas were screened.
But now there is a new effort to raise awareness. The FGS Integration Group (Fig), a global coalition established in 2022, is lobbying governments and donors to incorporate FGS treatment in their sexual and reproductive health programs.
Group members were at the international AIDS conference in Munich, Germanyin July to push for the UNAids target – 90% of girls and women must be screened for FGS in endemic areas by 2025. Women with FGS are three times more likely to contract HIV.
“We are in danger of falling behind on HIV prevention goals,” says Yael Velleman, co-chair of Fig and director of policy and innovation at the charity Unlimit Health. If we have this disease that triples the risk of infection, it’s going to take a lot longer and cost a lot more to end the pandemic.”
Kitsao went for a regular medical checkup when she was diagnosed by a doctor trained by the Kenyan nonprofit LVCT Health, which started running FGS awareness campaigns this year.
Data on the incidence of the disease in Kenya is limited, but LVCT says of the 2,714 women who underwent its cervical cancer screenings in western and coastal regions since April, 11% had FGS. In a random study conducted in June in Junju, a small coastal town in Kilifi County, 11 out of 19 women tested positive.
“This shows that the problem is big, that many women suffer in silence because they are not informed about it,” says Kiti Mwangome, a reproductive health researcher with LVCT.
Gynecologist Victoria Gamba leads FGS training in Kenya and taught the team at Kilifi District Hospital to spot the condition. “The medical profession has contributed to the neglect of this disease, and I want to help undo that,” she says.
Naima Omondi, a family planning practitioner at the hospital, now screens all women for FGS when she fits them with an IUD, or screens them for cervical cancer. “When I did cervical screening and saw the yellow spots [linked with FGS], I thought it was cervicitis. I would see the same patients come back for treatment over and over again, and we would pump them with antibiotics. After a while, they would lose confidence in the facility,” she says.
FGS can be treated with praziquantel, a drug that kills parasitic worms and is routinely given to school children in endemic areas. However, the drug is less effective the longer the disease goes undetected. Low demand for praziquantel indicates low diagnosis of FGS, medics say. Margaret Maina, a pharmacist at the district hospital, says a can of 1,000 tablets can last up to a year. “If we see an increase in demand for it, that’s how we’ll know if the [training] program worked.”
Kitsao is now careful when fetching water, a task that begins at 6am and continues throughout the day. “I always have a lot to do, so when I was off for so long, it really took a toll on me and my family.
to newsletter promotion
“I kept wondering who would take care of my children if it got worse,” she says, picking up two jerry cans and heading down to the pond with her two daughters and niece. They clean their feet in a pool of water before reaching the pond of stagnant water covered with green leaves and algae.
“We use this water for everything. There aren’t many options, so we try to take the cleaner edges,” says Kitsao, using a stick and makeshift funnel to avoid treading water.
“I used to go into the pond to do it faster, but now I try to collect from here to reduce the risk [of FGS].”
Advocacy groups say that, to tackle FGS in the long term, governments must focus on prevention rather than treatment, to provide communities with access to safe water and proper sanitation. The parasites can be killed if water is left to sit for 24 hours before use, many households do not have space to store it.
Zenabu Baya, a 44-year-old farmer, has to walk “30 minutes each way” to the murky lake that is her family’s water source. Sitting in the shade outside her house with her newborn grandson, freshly washed clothes drying in the sun, she says the household’s water needs have increased.
“It is no longer easy to walk so far at my age,” says Baya. “Vendors sell clean borehole water, but it goes for 10 [Kenyan] shillings [about £0.06] for 20 liters. For a house of seven, we would need at least a few jerry cans, so it would become unaffordable.” The family earns around 300 shillings (£1.75) a day
Baya contracted FGS late last year and says the abdominal pain was “unbearable”.
“It was so bad that my neighbors would knock on my door and I couldn’t even leave the house,” she says. She talks openly about the condition with neighbors and friends and encourages anyone showing symptoms to seek treatment.
“If this was my experience, I wonder, after suffering for less than a month, how others deal with it for a long time,” she says. She is worried about contracting the disease again, but “for now, if I can’t afford paid water, what do I do?
“What we can do is make sure people know it can be treated.”
