The neglected worm that is affecting the reproductive health of women and girls in African communities

By: Edna Wanjiru

Growing up in an African home, conversation around sexual and reproductive health was taboo. Mothers who are expected to speak to their daughters about such matters shy away from it since they think about sex as “bad manners.” I remember the first time I had a urinary tract infection, I stayed silent for days before telling my mother and eventually only did so when she was away at work, and I didn’t have to look at her as I explained. Even after coming from the gynecologist, we barely had a conversation about it and just went to the pharmacy to get medicine. This scenario is not an isolated or unique problem to me but the story of many Kenyan women. Fear and stigma surrounding problems in one’s reproductive health keep most girls and women from speaking about this.

Every human being is entitled to safe work and living environments, the opportunity to go to work or do daily chores without fear that one’s health is at risk. This, however, is not the case for 436 million individuals who are at risk of infection by schistosomiasis commonly known as bilharzia. Schistosomiasis mostly affects poor and rural communities, particularly those involved in agricultural and fishing activities. Women doing domestic chores in infested water, such as washing clothes, are also at risk of infection. Schistosomiasis is a major yet neglected public health problem, and second to malaria in terms of parasite-induced human morbidity and mortality worldwide with 112 million people in Sub-Saharan Africa being infected annually. The global burden due to schistosomiasis is currently estimated at 3.06 million disability-adjusted life years annually (DALYs).

Two-thirds of schistosomiasis infections are caused by Schistosoma haematobium, the etiologic agent of urogenital schistosomiasis. S. haematobium has been identified as a Group 1 carcinogen and is associated with bladder cancer and might account for up to 30% of all cancer cases in some endemic regions. It is also associated with female genital schistosomiasis (FGS) that may be the most common gynecological condition in women and girls of reproductive age in endemic areas. FGS has been linked to 3-4 times increased risk in acquiring HIV and STDs and a co-factor in the development of cervical cancer.

Secondary infertility due to schistosomiasis infection has led to shame and stigma among women in many communities. Infertility can be particularly devastating for women in communities in which motherhood is a key aspect of female gender identity. Infertility for women in these communities can therefore be seen as a unique form of gendered suffering, which can exclude women from important social roles. The symptoms of infection are very similar to those of sexually transmitted diseases, hence the misdiagnosis. Stigma, shame, and fear associated with the symptoms of FGS has led to underreporting of the infection hence very severe implications for women’s reproductive health.

Amartya Sen stated that the more freedom people have the greater the development and for people to have freedom, the unfreedoms that they face each day must be removed. For women and girls living in schistosomiasis endemic areas in Kenya, they lack access to opportunities and knowledge that will give them capabilities to escape premature morbidity caused by this infection. There is a need to expand the capabilities of women and girls in these communities and give them the freedom they deserve to improve their livelihoods and in turn live a comfortable life with no fear of discrimination and be confident to take charge of their reproductive health.

Through the ThinkWell Samya Stumo Fellowship, I desire to empower women and girls living in a schistosomiasis endemic area in Kenya to take charge of their sexual reproductive health and promote health-seeking behavior to reduce the adverse morbidity caused by the infections. Through community participatory processes and understanding of the community’s current knowledge, perceptions, attitudes, and behaviors as well as motivators and barriers to behavior change, I will be able to develop a health literacy program that will help in improving health outcomes.