The Farmer And Fisherman Who Lost His Sight To River Blindness

Jan 14, 2016
Originally published on January 15, 2016 5:45 am

"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 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.

Copyright 2016 NPR. To see more, visit http://www.npr.org/.

Transcript

DAVID GREENE, HOST:

We're going to learn more about something the World Health Organization calls a neglected tropical disease. It's river blindness, and in parts of Africa, river blindness is not neglected as much as it is feared. The blindness is actually the final stage of a parasitic infection that involves intense itching. People often scratch for so long and so hard, they develop so-called lizard skin. NPR's Jason Beaubien recently traveled to Ghana and has the story of one man's struggle with his disease. And we should say, some people might find descriptions here difficult listen to.

JASON BEAUBIEN, BYLINE: Emmanuel Kwame taps a well-worn stick in front of him as he makes his was across existing the village of Asubende in central Ghana. He navigates past chickens, sleeping dogs and a cement sewage canal. Then he veers towards an open fire where a woman is cooking fufu in a charred metal pot.

UNIDENTIFIED BOY: (Yelling in foreign language).

BEAUBIEN: A boy yells at him to stop. The boy then grabs Kwame's stick and leads him around the fire. Kwame, who's now 60 years old, says he started to get sick with river blindness in his 20s.

EMMANUEL KWAME: (Through interpreter) I started having nodules and swelling all around my body. And then, I - it would appear. I'd see some worm on my eyes. I would see them moving across my eyes. And I realized my eyes were no good.

BEAUBIEN: This disease is caused by a roundworm infection. As the parasites reproduce, hundreds of thousands of larvae spread throughout the person's body. They cause blindness by repeatedly penetrating the eyeball. The worms knot up under the skin. Kwame says the itching from the parasites was unbearable.

KWAME: (Through interpreter) You scratch so much. And if it were now, I couldn't have even spoken to you because I would be scratching all over.

BEAUBIEN: This village of Asubende has been hard hit by river blindness, also known as onchocerciasis. Of Kwame's 12 siblings, six lost their eyesight. In the late 1980s, Ghana switched strategies in the battle against the disease. Up to that point, Ghana had been using insecticides to try to kill the black flies that carry the river blindness parasite. The new strategy that's still being used today goes after the parasites inside people. The government treats entire villages every year with a drug called ivermectin. This is meant treating roughly 4 million Ghanaians a year, or more than 15 percent of the population. And the strategy is paying off. Three decades ago, more than 80 percent of the residents of Asubende were infected with parasite. That number has dropped to just 3 percent today. Kwame says his generation appears to be the last stricken with the blindness.

KWAME: (Through interpreter) I cannot say that the disease is totally gone. But since they started distributing these new drugs, I have not seen anybody getting blind again in this community.

BEAUBIEN: The 2015 Nobel Prize for medicine went in part to two researchers who discovered ivermectin. Kwame is well aware that his life would have been very different if these drugs had come earlier. He still has some aches that he blames on river blindness. But his biggest complaint on this day is the goats. He's showing me his vegetable garden next to his hut.

KWAME: (Through interpreter) Have you seen this? This is pine nuts. It was growing, and some goats came to eat it.

BEAUBIEN: In addition to his garden, he has a grove of 70 cashew trees. And he tries to grow cassava and plantains. The goats, however constantly slip through or over his fences and eat his plants. I'm a bit surprised that he can grow anything given the nimble goats, the rapidly growing tropical weeds and the fact that he can't see. He shrugs and says the trick to gardening blind is straight lines, planting everything in straight lines. Kwame is proud that he can support himself. He wants to show me the Pru River. He has a complicated relationship with this river. Decades ago, it took away his eyesight. But throughout his life, it's also been a source of income. He says he can make more money fishing than he does from any of his crops. On land, Kwame walks hesitantly, constantly tapping and probing with his stick. But when he steps in the river, something changes. He seems to stand a bit straighter. He moves smoothly, confidently through the water. Waist-deep in the rapids, he pulls out a fishing net that's about the size of a bed sheet. He runs his fingers over the lines, searching for knots and that the weights aren't tangled. And then he flings the net out across a pool. Eventually, he strides back to the bank, where girls are washing laundry on smooth, dark rocks.

KWAME: (Through interpreter) I didn't get anything. I threw the net, but nothing came in. There's no fish now.

BEAUBIEN: Some days he catches fish, he says. Some days he doesn't. The worst thing about his blindness, Kwame says, was the timing of it. He went blind before he was able to get married. And he never got a chance to have a wife or children. Again, he shrugs. But those men who won the prize for discovering ivermectin, he says, they should be given many, many more prizes. Jason Beaubien, NPR News, Asubende, Ghana.

GREENE: And tomorrow, we'll hear why a wonder drug alone is not enough to wipe out river blindness. Transcript provided by NPR, Copyright NPR.