“It just went completely white.”

This is the how fisherman Akoyo Osumaka describes going blind in 2011, in the remote village of Babagulu in the Democratic Republic of Congo (DRC). It was a slow, creeping blindness that began a year earlier. It robbed him of his livelihood and threw his family life into disarray.

Tragically, Akoyo had once fought against the disease that eventually robbed him of his sight – by volunteering to distribute drugs that help prevent transmission of river blindness.

Babagulu is one of many the villages surrounding the city of Kisangani that is devastated by river blindness, a neglected tropical disease transmitted by the bite of a blackfly. Thick jungle surrounds the villages, which are lined up along the only major dirt road that continues for hundreds of kilometres until the next city in this massive country.

The river Onane runs through Babagulu, and is a perfect breeding ground for the blackflies that swarm through the village, infecting people with filarial worms that cause river blindness. Akoyo is one of the many living in the village with the disease – community leaders think that up to 3% of the community is blind.

Akoyo was a fisherman. In 2003 the Congolese government started a treatment programme to distribute a drug called ivermectin in endemic river blindness regions that can stop transmission of the disease. It can’t cure it – but if taken every year it can reduce the number of worm larvae in people’s bloodstreams, preventing blindness if taken regularly.

Akoyo felt the need to help so he volunteered to help distribute ivermectin – these programmes rely solely on unpaid drug distributors to work within their communities. He would travel to neighbouring villages, often deep in the bush, to distribute the drugs. He was bitten often during his travels.

One day his village had a stockout of the drug and he stopped taking it “I was told to deliver all the drugs and then I would take it later once I started to have symptoms,” he remembers. But then there were no more drugs to take. He then ended up missing distribution programmes in his village because he was out fishing in forest streams.

In 2010 Akoyo started to have difficulties seeing and in 2011 he went completely blind.  

His son Aito does not go to school and had to quit his job because of the stress of caring for his father. Aito has a number of “nodules” on his torso and forehead. The adult worms that cause river blindness live in these fibrous nodules, that appear as grotesque bumps the size of a golfball. His father Akoyo also had a number of these nodules – they are painless, but are a clear sign of infection by the worms that cause river blindness.

Taking care of his father is a full time job. Aito also suffers from epileptic seizures about four times a month. Researchers have noted a potentially causal relationship between onchocerciasis infection and forms of epilepsy found in Africa. Babagulu has a very high proportion of people that suffer from epileptic seizures – a trend that has been observed in areas with high river blindness prevalence. Some researchers have suggested recently that worms cause an autoimmune reaction that damages the nervous system. 

The association between river blindness and epilepsy is under investigation. Meanwhile, no one has access in Babagulu to simple antiepileptics that can prevent seizures.

“I depend totally on my wife, she feeds and dresses me,” says Akoyo. “Even my wife doesn’t have a job. After I lost my sight we couldn’t send any of our children to school.” 

Babagulu was the site of some deaths due to adverse effects of ivermectin, probably because of coinfection with loa loa, also known as African eye worm. People with a high concentration of loa loa in their body are at risk of side effects if they receive ivermectin. Even though the deaths were in 2003/4, the scars are still evident today and some people are scared to take ivermectin. The drug – which earned its inventors a Nobel Prize in 2015 – has greatly helped to reduce transmission of the disease throughout Africa and Latin America, but in some areas that are affected by loa loa, distribution has been a challenge.

According to Jean Bagoma, the village nurse at the local health clinic, “people don’t want to take a drug that doesn’t remove their nodules, doesn’t ‘cure’ them. A drug that kills the adult worms is needed. Our people want a drug that can cure them.” 

To learn more about our work to develop new drugs for this neglected disease, click here.

Please have a look at Akoyo’s story, animated below, with a traditional song recorded in his region about river blindness:

This story is part of DNDi’s “Revealing the Neglect” series, where we are using drawings to tell the stories of patients that a photo can’t tell. Stay tuned for more stories!