(SOurce-theguardian.com)
After a year of debilitating pain, Penina Kitsao finally discovered the cause of her suffering during a routine screening for an unrelated issue of the neglected disease. The 33-year-old farmer from Kilifi in eastern Kenya had contracted female genital schistosomiasis (FGS) from parasitic worms in the pond her family uses for all their water needs.
“I couldn’t do anything for weeks,” Kitsao recounts. “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.”
A Widespread yet Neglected Disease
FGS affects an estimated 56 million women and girls, primarily in sub-Saharan Africa, yet remains a largely unknown and neglected condition. While it can be easily treated if diagnosed promptly, if left untreated, FGS can lead to reproductive organ damage, infertility, and increased susceptibility to HIV.
The waterborne parasite infects women and girls who rely on rivers and ponds for their daily water needs. The parasites are small, ranging from 1cm to 2cm in length, and burrow through the skin to travel through the bloodstream, laying eggs. Symptoms such as fever, pelvic pain, bloody discharge, and itching can be mistaken for sexually transmitted infections, leading to frequent misdiagnosis.
The Challenge of Accurate Diagnosis
Accurate data on the prevalence of FGS is scarce due to the lack of standardized testing. Research published in March indicates that only 15,000 girls and women in endemic areas have been screened. However, there is a growing effort to raise awareness about neglected disease.
The FGS Integration Group (Fig), a global coalition established in 2022, is campaigning for governments and donors to incorporate FGS treatment into sexual and reproductive health programs. Group members advocated for this cause at the international AIDS conference in Munich, Germany, in July, pushing for UNAIDS to achieve a target of screening 90% of girls and women in endemic areas by 2025. Women with FGS are three times more likely to contract HIV.
Early Detection and Treatment
Dr. Yael Velleman, co-chair of Fig and director of policy and innovation at the charity Unlimit Health, emphasized the urgency of addressing FGS. “We are in danger of regressing on HIV prevention goals,” she warned. “If we have neglected disease that is increasing the risk of infection threefold, it’s going to take a lot longer and cost a lot more to end the pandemic.”
Penina Kitsao was diagnosed during a regular medical checkup by a doctor trained by the Kenyan nonprofit LVCT Health, which launched FGS awareness campaigns this year. LVCT’s data reveals that of the 2,714 women who underwent cervical cancer screenings in western and coastal regions since April, 11% had FGS. A random study in June in Junju, a small coastal village in Kilifi County, found that 11 out of 19 women tested positive for FGS.
Medical Community’s Role
Gynecologist Victoria Gamba, who leads FGS training in Kenya, has taught the team at Kilifi County Hospital to identify the condition. “The medical profession has contributed to the neglected disease, and I want to help undo that,” she states.
Naima Omondi, a family planning practitioner at the hospital, now checks all women for FGS when fitting them with an IUD or screening for cervical cancer. “When I used to see the yellow patches linked with FGS, I thought it was cervicitis. I’d see the same patients come back repeatedly for treatment, and we would pump them with antibiotics. After a while, they would lose faith in the facility,” she explains.
FGS can be treated with praziquantel, a drug that kills parasitic worms and is routinely given to schoolchildren in endemic areas. However, the drug’s effectiveness decreases the longer the neglected disease goes undetected. Low demand for praziquantel suggests low diagnosis rates of FGS. Margaret Maina, a pharmacist at the county hospital, notes that a tin of 1,000 tablets can last up to a year. “If we see a surge in demand, that’s how we will know if the training program worked,” she says.
