Surviving the Snails of Uganda

A young man’s brush with a mysterious disease

Schistosomiasis survivor Francis Angumya stands on a beach on the banks of Lake Victoria in Entebbe, Uganda. The 23-year-old student believes he contracted the neglected tropical disease schistosomiasis while swimming several years prior. / Katie G. Nelson, RTI International

As a teenager, Francis Angumya often played with his friends in Africa’s largest lake, not understanding the dangers that lurked underneath.

The 23-year-old student had left his home in rural Uganda to pursue a better education and brighter future — a search that ultimately brought him to the shores of Lake Victoria. He had enrolled at an all-boys high school just a short drive from Entebbe, a popular holiday destination on the lake’s northern shores.

His wistful memories of afternoons swimming in Lake Victoria have all but washed away — replaced by a terrifying experience that changed his life forever.

In April 2016, Francis suddenly woke to excruciating pain pulsating from his stomach. Then he started vomiting blood. “It was not about to stop,” he said.

Rushed to a nearby hospital, doctors spent three days running a barrage of medical tests in hopes of finding whatever was making him so sick.

The doctors discovered a scarred liver, stomach ulcers and abnormally high blood pressure. But Francis’s tests failed to reveal the cause of his mysterious illness.

With doctors scratching their heads, Francis was referred to a gastroenterologist in Kampala, Uganda’s bustling capital. Finally, they had answers. Francis was diagnosed with an advanced case of intestinal schistosomiasis, which had ravaged his organs and increased his likelihood of experiencing kidney failure, hypertension, enlarged spleen and several other complications in the future.

“It damaged everything to the full and then it was flushed out (of my body),” he said. “I had schistosomiasis way back, and I never knew.”

Bob Shaban, 37, holds a handful of freshwater snails pulled from the banks Lake Victoria in Uganda. Small snails like these often harbor a parasitic flatworm that thrives in bodies of water contaminated by the feces of an infected host. / Katie G. Nelson, RTI International

Schistosomiasis is caused by parasitic flatworms that live in freshwater snails commonly found in lakes and rivers. More than 90 percent of cases are found in Africa.

Spread through the feces and urine of an infected person — oftentimes when they defecate in or near water schistosome larvae penetrate through the host’s skin, making those who frequently swim, bathe or wash clothes in freshwater particularly vulnerable to the disease.

More than 200 million people are infected with schistosomiasis around the globe. Many are unaware of the dangers of spending time in contaminated water. Many don’t even realize they have been infected, like Francis.

Schistosomiasis is considered one of a group of infections designated neglected tropical diseases.

Neglected tropical diseases affect more than 1.4 billion people around the globe, many of whom live in extreme poverty and geographically isolated communities.

But many are working to change that.

Led by Uganda’s Ministry of Health, a group of public health specialists, community health workers, teachers and community members are working to control or eliminate five of the most pressing neglected tropical diseases in Uganda: lymphatic filariasis, onchocerciasis, trachoma, soil-transmitted helminths and schistosomiasis.

These efforts have led to big success in recent years.

For more than 10 years, USAID and partners — including RTI International and the Schistosomiasis Control Initiative — have supported Uganda’s Ministry of Health to ensure all endemic districts in the country have access to life-saving medication and to prevent future morbidity in a generation of Ugandan children. In doing so, USAID is helping ensure that a healthy Ugandan population can contribute to their economy and lead their country to prosperity.

This partnership has resulted in a significant reduction in areas with high infection. Like Francis experienced, high infection — the intensity of worms carried by a person — can be life threatening. In 2017, reassessment surveys were conducted in nine districts, with results showing that seven of them could begin to scale down treatment, due to successful programs. This is a positive step, with fewer communities in Uganda facing the most severe impacts of the disease.

But efforts to end schistosomiasis are often met with challenges. The survey results also revealed that infections remain high in two districts, indicating that heavy infections persist in these areas.

Through American generosity, USAID has created a flagship project for the control and elimination of neglected tropical diseases known as the ENVISION Project, supported by RTI International. There is a sense of optimism within the program.

“My hope is that we stop the morbidity, we stop the disease from developing and making people sick and killing people,” said Ambrose Onapa, chief technical advisor at RTI International.

Francis is one of the lucky ones, said Onapa. “Once patients start vomiting blood, that is the end of the story; that is when you’re about to die,” he said.

Schistosomiasis survivor Francis Angumya, 23, poses with his sister Gloria Kbagye, 28, in Kampala, Uganda. Kbagye was Francis’s primary caregiver after he was diagnosed with schistosomiasis in 2016. She continues to take him to his medical appointments and monitor his health. / Katie G. Nelson, RTI International

Francis remains optimistic about Uganda’s efforts to control schistosomiasis and hopes to become more involved in educating communities about the disease that nearly took his life.

“I want to bring awareness (about schistosomiasis) … and make something positive out of this experience,” he said.

Walking along the banks of Lake Victoria, Francis points out the popular swimming hole that he often visited after school.

“It was a treat to come down here. The visits were always fun,” he said, while fixing his gaze on the horizon. “I always thought snails were harmless. I never had any fear.”

About the Author

Michael French is a Senior Manager for Neglected Tropical Diseases at RTI International. He supports the ENVISION project, USAID’s flagship for the control and elimination of neglected tropical diseases.