Frequently asked questions about FGS

FGS is a neglected tropical disease (NTD) that is caused by a parasitic worm known as Schistosoma haematobium. The disease damages the genital tract of women and girls who come into contact with contaminated freshwater. It’s often misdiagnosed for being a sexually transmitted infection or cervical cancer.

FGS primarily affects women and girls in sub-Saharan Africa. Around 56 million are currently living with the disease, most without access to safe water, sanitation, or healthcare. Adolescents and women of reproductive age are especially vulnerable.

This disease is often overlooked because its symptoms resemble that of other conditions. FGS is frequently misdiagnosed, leading to many women suffering year without answers. The lack of awareness among health workers and limited diagnostic tools keeps the disease hidden.

Effect Hope supports national health systems to recognize, diagnose, and treat FGS correctly. Beginning in Liberia, this includes training healthcare workers, integrating FGS care into routine services, ensuring access to treatment, and embedding dignity-centred care into long-term health strategies.

FGS can cause pelvic pain, vaginal bleeding, infertility, and discomfort during sex. Since these symptoms mimic other conditions, women are frequently misdiagnosed and face stigma, shame, and isolation.

Diagnosis requires trained health workers who recognize symptoms and use reliable screening tools. Praziquantel (PZQ) can kill the parasite, prevent further damage, and may reduce some symptoms. However, it is approved for schistosomiasis, not specifically for FGS, and therefore advanced lesions cannot be fully reversed.

Pilot projects have shown that healing is possible, but lasting systems are still needed, so care doesn’t depend on geography or luck. At the same time, there is ongoing research to repair tissue damage, ease symptoms, and improve long-term outcomes for women affected by FGS. Your support helps turn early progress into permanent access.

FGS can cause infertility, miscarriage, and complications during pregnancy. It also increases vulnerability to HIV and other infections, making reproductive healthcare essential.

No. FGS cannot be passed from person to person. It spreads when people come into contact with freshwater that is contaminated by the parasite’s larvae.

Prevention includes access to clean water, improved sanitation, and regular treatment of praziquantel (PZQ) in endemic regions.

Liberia is the first country to formally recognize FGS as a national health, gender, and social issue. They are embedding care into policy and health systems, with support from Effect Hope and additional partners.

FGS is both a health and gender justice issue. It disproportionately affects women and girls, limiting education, employment, and family life.

Donors help transform pilot projects into national systems — funding training, access to treatment, and community awareness campaigns that make care sustainable.

Effect Hope helped move FGS from a pilot project to national commitment — securing government recognition and building systems that ensure care remains beyond short-term funding. It’s the first of its kind model for global replication and long-term impact.

The goal is to replicate Liberia’s success across other endemic countries, ensuring every woman has access to diagnosis, treatment, and dignity-centred care.