FGS impacts the health and well-being of 56 million women and girls worldwide, mostly in sub-Saharan Africa. Yet FGS is little talked about and often misunderstood. We want to change that
Published on 30 June 2023 | Lucy Gale
Schistosomiasis, also known as bilharzia or snail fever, is a neglected tropical disease (NTD) that is caused by tiny, parasitic, blood-dwelling worms that are found in freshwater lakes, ponds and rivers, primarily in countries across Africa. The tiny worm is not visible to the naked eye and enters a person's blood system without them knowing. This happens when they are using infected lakes, ponds and rivers for activities such as bathing, washing, collecting water and fishing. Schistosomiasis is a disease of poverty.
Female Genital Schistosomiasis (FGS) is when schistosomiasis affect the female genital area, causing inflammation, open sores and bleeding on the cervix and vagina.
Although both preventable and treatable, levels of FGS awareness, access to the drug Praziquantel and equipment are all limited. As a result, FGS is commonly misdiagnosed and treated as a sexually transmitted infection (STI) – leading to years of suffering and stigma for women living with the disease.
If left untreated FGS puts women at risk of serious reproductive health issues, including infertility and cervical cancer. FGS also makes women and girls more vulnerable to HIV due to the presence of sores which can bleed and provide an entry point for the virus. Some studies have found that women with FGS are 3-4 times more likely to also have HIV.
Given the high prevalence of HIV in many FGS endemic areas it is essential that a holistic client-centred approach is taken that recognises the interlinkages between these two conditions.
Increasing the health literacy of communities, and their community health workers, is key to this approach.
HIV and FGS do not stand alone. It is only by integrating FGS prevention, early diagnosis, and treatment into existing community HIV and sexual and reproductive health and rights (SRHR) efforts that we will see real improvements in both FGS and HIV prevention and treatment.
Increasing the health literacy of communities, and their community health workers, is key to this approach. Communities have little knowledge of the risks that bathing, washing, and using infected lakes and rivers can cause to their genital health. In many societies genital health is a taboo subject, and it is rarely addressed due to the shame and stigma attached to infertility or any genital ill health. It is only by de-mystifying the disease and directly challenging the common myths and assumptions that surround genital health that any real progress will be made.
It is with this approach in mind that Avert joined the FGS Integration Group (FIG). FIG is a consortium of organisations across the NTD, SRHR, HIV and water, sanitation and hygiene (WASH) sectors all driven to provide new ways of addressing FGS and reducing its impact on vulnerable women’s health in a coordinated and holistic manner.
Boost is a digital job-aide designed and developed in collaboration with more than 100 community health workers and organisations working with them in sub-Saharan Africa.
Working in partnership with OPHID, in Zimbabwe, we have recently built on Avert’s existing Boost platform to create new content on FGS and increase awareness and access to information on HIV, sexual health, family planning, FGS and mental health services across four provinces in Zimbabwe – reaching over 250,000 young people (aged 10-24) by April 2024.
Community health workers play a pivotal role in these communities, opening discussions at the household level and informing and directing community members to appropriate services. Community health workers can provide clarity and dispel commonly held myths about FGS – encouraging awareness around prevention, cause, early diagnosis, and treatment.
The right of an individual to be empowered and informed to make decisions about their own health outcomes is central to all this work, building their agency and supporting longer-term self-care.
Community health workers are perfectly positioned within their communities to increase understanding about the risks of FGS, address the stigma surrounding the disease, and support demands for better access to treatment and services. Increasing awareness of FGS in communities, in health services, and among local leaders is one way to ensure steps are taken to improve prevention and treatment of the disease.
Boost supports community health workers to do this by providing them free, up-to-date information on FGS and HIV (and wider SRH and other primary health information). It can help them to fight misinformation and provides a trusted and trustworthy source of information that can be shared directly with clients.
The free digital job aide Boost can be accessed online at boost.avert.org/ or by downloading the native app from the Android app store.
How you can help
Would your community health cadres benefit from Boost? Would it add value to their work and increase impact in their communities? If so, we’re eager to work with you.
Photo credit: iStock/pierivb. Photos are used for illustrative purposes. They do not imply health status or behaviour.
