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The Farmer And Fisherman Who Lost His Sight To River Blindness

Emmanuel Kwame, 60, lost his sight to river blindness as a young man. He lives in Asubende, Ghana, earning a living as a farmer and fisherman.
Jason Beaubien
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.

"Look. Have you seen this?" asks 60-year-old Emmanuel Kwame, who's completely blind. We are standing in his vegetable garden in the village of Asubende in central Ghana. I do see what he's pointing at, but I'm unclear what he "sees." He's tapping his walking stick against a denuded stalk that used to be some sort of plant. "This is palm nuts. It was growing, and some goats came to eat it."

In Asubende, goats are the bane of the blind. Goats are clever. They're quick. They defy gravity and fencing.

Despite the goats, Kwame keeps a small vegetable garden and a grove of 70 cashew trees.

Kwame first started to get sick with onchocerciasis, commonly known as river blindness, when he was in his 20s. The disease is caused by a roundworm infection that's spread by black flies.

"I started having nodules [lumps of worms just under the skin] and swelling all over my body," he says. "And then it would appear as if some worms were on my eyes. I would see them moving across my eyes and I realized my eyes were no good."

As the parasites reproduce, hundreds of thousands of larvae spread throughout the person's body. Blindness is actually a late stage of the disease. The worms knot up under the skin. Most of the baby worms — hundreds of thousands of them — die just below the surface of the skin, which causes severe itching. Kwame says the discomfort was unbearable.

"You will scratch and scratch," he says. "If it were now, I couldn't even talk to you because I'd be scratching all over."

The village of Asubende has been hard hit by onchocerciasis. Of Kwame's 12 siblings, six lost their eyesight.

But then in the late 1980s, Ghana began distributing ivermectin, a drug that kills the parasite that causes river blindness, to populations at risk. And rates began dropping. Three decades ago, more than 80 percent of the residents of Asubende were infected with the parasites. That number has dropped to just 3 percent today.

Kwame's generation appears to be the last stricken with the blindness.

"I cannot say the disease is totally gone," he says. "But since they started distributing the new drugs, I have not seen anyone becoming blind in this community."

Kwame is well aware his life would have been very different if these drugs had come earlier. He says the worst thing about onchocerciasis was that it hit him when he was in his 20s and robbed him of the chance to marry.

Then he shrugs — as if to say, "What are you going to do?" — and starts talking about how fishing is superior to farming. There's the obvious benefit that goats take no interest in fishing. Plus, he earns more money selling fish than he can selling cashews.

Kwame comes out of the Pru River, where he tosses his nets to catch fish. Black flies that breed in the water carry the parasite that took away his eyesight.
Jason Beaubien / NPR
The Florida Channel
Kwame comes out of the Pru River, where he tosses his nets to catch fish. Black flies that breed in the water carry the parasite that took away his eyesight.

Kwame wants to show me the Pru River. The type of black fly that spreads onchocerciasis breeds in oxygen-rich, rapidly flowing rivers like the Pru. It flows along the edge of Asubende. Young girls and women wash clothes along the banks. Boys collect water for drinking and washing.

Kwame has a complicated relationship with this river. Decades ago it took away his eyesight, but throughout his life it's been a source of income.

As Kwame approaches the river, he walks hesitantly, tapping and probing at the ground in front of him with his stick. But when he steps into the river, something changes. He moves smoothly, confidently through the water. Waist-deep in the rapids, he pulls out a fishing net about the size of a bedsheet.

He runs his fingers over the line, searching for knots. He checks that the weights aren't tangled, then flings the net across a section of the river where there aren't rapids.

After about a half-hour, he strides out of the water.

"I didn't get anything," he says. "There's no fish now."

Some days he catches fish; some days he doesn't.

River blindness altered Kwame's life but hasn't hobbled him.

"I take care of myself," he says defiantly. "I earn my own living. I feed myself from the work that I do. Nobody helps me. I sleep and wake up on my own."
He even plans to expand his small farm. He's building a pen to raise pigs. And he's come up with a new tactic in his war with the goats. He wants to plant a line of thick bushes around his garden — bushes so thick that the goats will never be able to wiggle their way through.

Join Us For A Twitter Chat On River Blindness

Want to know more about river blindness? Dr. Neeraj Mistry, the managing director of the Global Network for Neglected Tropical Diseases, will be taking your questions on Twitter on Friday, Jan. 22, from 11 a.m. to 12 p.m. ET. Leave your questions in a comment below, or tweet them to @NPRGoatsandSoda with the hashtag #RiverBlindness.

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Jason Beaubien is NPR's Global Health and Development Correspondent on the Science Desk.