DONATE

How our research could help more than 50 million women

Omosefe Osinoiki, June 2024

Female genital schistosomiasis is a devastating disease that is estimated to affect millions of women and girls across Africa. As a researcher at Sightsavers, I’m working to understand how we can provide better care to these women.

Female genital schistosomiasis (FGS) is caused by water-borne parasitic worms that infect people as they fetch water, bathe and wash clothes. The parasites burrow through the skin to live in the blood. As they reproduce, their eggs migrate into organs including the uterus, vagina and fallopian tubes, causing inflammation and bleeding.

In areas where these Schistosoma parasites are present, up to 41% of women and girls could be affected by the condition, according to research that we’ve carried out recently in Nigeria.

Women with FGS are three times more likely to get HIV, and may also be more susceptible to cervical cancer. The disease has also been linked to an increased risk of low fertility and life-threatening ectopic pregnancies. The problem is compounded by a lack of knowledge among health workers in many low-income countries. The disease is often misdiagnosed as a sexually transmitted infection, meaning that women can be subjected to isolation and even gender-based violence.

Due to the discomfort and stigma that is associated with FGS, it is not surprising that women with the condition are more likely to suffer from poor mental health. Our research indicates that nearly a third of women with FGS could experience mild or moderate depression after contracting the disease.

A lab scientist in Nigeria examines samples under a microscope.
All images ©Sightsavers/Taiwo Aina
A group of women in Nigeria collect water in basins from a muddy river. They're surrounded by lush greenery.
A group of women in Nigeria collect water in basins from a muddy river. They're surrounded by lush greenery.

Women and girls typically contract the parasite after washing with contaminated water. It can be fatal if left untreated.

FGS is a huge problem, but it’s one that can be solved. We believe that findings from our recent project in Nigeria could help to tackle this disease.

We’ve been speaking to women living with the condition, as well as health workers and gynaecologists who are based in affected communities. This has given us a better understanding of why women are not receiving adequate treatment, and how countries can integrate the management of FGS into their health systems.

We are now able to recommend a set of key improvements that policymakers and health workers can implement at every step of the way, to make a difference for the women affected by FGS. You can find these recommendations listed below.

However, the responsibility for overcoming the disease doesn’t just rest with health workers. We will also need support from international donors, pharmaceutical companies – and even you as the reader of this blog.

You can play a role in raising awareness by using the #FGSchisto hashtag on social media, and by speaking about the condition with family, friends and colleagues.

A close-up of a researcher's hands writing notes into a form in French.

Sightsavers’ research

We support research in eye health, neglected tropical diseases, education and social inclusion. Our in-house research team is comprised of more than 30 people around the world.

Visit our research centre
Olubunmi, a gynaecologist from Nigeria, smiles while wearing a blue plastic medical apron and mask under her chin.
Olubunmi, a gynaecologist from Nigeria, smiles while wearing a blue plastic medical apron and mask under her chin.

“FGS can easily be diagnosed, and even the least-skilled people in the health care system can diagnose it. Health workers should also know that treatment is available.”

Olubunmi Babatola, gynaecologist

Three actions that can address FGS

1.Training health workers to diagnose FGS
According to Olubunmi Babatola, a gynaecologist who was involved in our research in Nigeria, it’s important to provide training so that health workers at all levels can recognise the signs of the disease.

“FGS can easily be diagnosed, and even the least-skilled people in the health care system can diagnose it,” Olubunmi says. “Health workers should also know that treatment with medication is available.”

2.Integrating testing into other health programmes
We need to increase the number of women and girls who are being tested for FGS. One of the best ways to do this is by including FGS testing alongside other forms of treatment.

Adesugba Abigeal, a health worker in Nigeria, told us: “it’s important to integrate FGS screening when treating other diseases such as HIV, and the human papilloma virus (HPV).”

“It’s also important to combine FGS with other programmes going on in the health centres, such as family planning and health education. […] When women take their children to the hospital, we can test them and know whether they have the disease.”

Our research has indicated other ways that health systems could take a more joined-up approach. Many countries are already running large-scale programmes to tackle schistosomiasis, yet these are typically focused on preventing children from contracting the disease. Our study suggests that these programmes could also act as a platform for raising awareness of FGS.

3.Improving water, sanitation and hygiene
Women and girls typically contract the parasite that causes FGS after coming in contact with infected surface water. The disease can be fatal if left untreated for a prolonged period of time. We need governments and international NGOs to work together to provide clean water and sanitation facilities for communities affected by the disease, so as to reduce their contact with infested water.

We also need to educate people in these communities about why they shouldn’t drink from, bathe in, or wash clothes in certain risky water sources.

Health worker Adesugba checks some medication in the clinic. She's surrounded by charts on the walls and paperwork on the tables.
Health worker Adesugba checks some medication in the clinic. She's surrounded by charts on the walls and paperwork on the tables.

“It’s important to combine FGS with other programmes. When women take their children to the hospital, we can test them.”

Adesugba Abigeal, health worker

Sightsavers and the FGS Integration Group

Sightsavers is part of the FGS Integration Group (FIG), a coalition of organisations that is galvanising joint action across the sexual and reproductive health and rights, HIV, HPV/cervical cancer, neglected tropical disease, and water, sanitation and hygiene sectors, to address the neglected issue of FGS.

Among other things, we are working to raise awareness and mobilise more funding to help treat the condition. If you’d like to support the work of FIG, please visit the coalition’s website, and find out more about how you can play your part in beating this disease.

This blog was originally published in June 2023, and has since been updated with the latest figures from our research.

About FIG

The FGS Integration Group (FIG) aims to improve diagnosis, treatment and prevention by integrating FGS services into sexual and reproductive health and NTD programmes.

Visit the FIG website

Author


Omosefe Osinoiki is a research associate at Sightsavers, based in our Nigeria office.

 

Learn more about our work on women’s rights

Equality for women and girls

More blogs

A group of smiling women in Nigeria hold posters and leaflets about family planning.
Sightsavers blog

Creating lasting change for women with disabilities in Kaduna state, Nigeria

We're attending the Global Health Practitioners Conference to showcase our work to improve access to sexual health services for women with disabilities.

Salome Luka Net, October 2024
Three children wash their hands with soap at a sink.
Sightsavers blog

How people across Pakistan collaborated to beat trachoma

Sightsavers’ Adnan Youhana shares how eliminating the eye disease was a true team effort, involving surgeons, radio hosts and Lady Health Workers.

Adnan Youhana, October 2024
Twelve-year-old Arthur smiles as he stands next to his teacher, Mr Thompson. They stand in front of a chalk board in a classroom.
Sightsavers blog

Child eye health is key to wellbeing and accessing education

In line with World Sight Day’s focus on child eye health, our experts reveal why eye screenings in schools are boosting students’ academic performance.

Sightsavers, September 2024