Female Genital Schistosomiasis (FGS) is a silent adversary – a hidden Neglected Tropical Disease (NTD) that debilitates women and girls in endemic regions. FGS hides in plain sight as it is misunderstood, misdiagnosed and shrouded in stigma. Yet, there is an opportunity for transformation.

Community health literacy campaigns are at the heart of this transformation. This approach has emerged as a powerful tool to dismantle misconceptions, eradicate stigma and empower women and girls to take charge of their health.

LVCT Health, in collaboration with the Ministry of Health, Health Departments and Primary Health Care workers in Homa Bay, Kilifi and Kwale Counties have taken this fight to the frontlines, FGS hot-spots, mainly around freshwater bodies, where FGS thrives. These campaigns have been pivotal in raising awareness about FGS, its symptoms, and how it is managed. Beyond being informative sessions, these campaigns were a lifeline. Opinion leaders, Women and girls who lived in the shadows of misinformation are now knowledgeable about the cause of FGS, symptoms and treatment options such as praziquantel. After participating in these health literacy programs, women and girls report a newfound understanding of where to seek diagnostic and treatment services, which has improved the uptake of integrated FGS and SRH services.

FGS carries a heavy social burden, as it is often associated with infertility and abnormal discharge, which leads to stigma and social isolation. These health literacy programs have opened the conversations in communities about FGS and addressing the root causes of these harmful misconceptions. Primary healthcare workers, Community leaders and Community Health Promoters (CHPs) have been crucial in normalizing conversations about FGS, transforming what was once a shameful condition into a topic of empowerment and hope.

These literacy campaigns contributed to dismantling these misconceptions by fostering open dialogues within communities. Community gatekeepers and CHPs can play a crucial role in normalizing discussions about FGS and its treatment.

The fight against FGS has just begun. Working with community leaders and primary health workers to integrate low-cost health literacy programs into routine community dialogue days holds the promise of eliminating FGS. Together, we are not just addressing the disease, we are restoring dignity and building healthier societies.

Written by Allan Oloo, an Assistant Research Officer at LVCT Health