Parán is a small dusty village in the foothills of the Andes in Peru, and for a long time, everyone had known about the men there who go blind by the time they’re 50. They also knew that a lot of the young men and boys have trouble seeing, especially at night.
Yessica Palomares has a 10-year-old son named Lucho.
“With my son, I started to realize that something was going on because he started to walk all wrong,” she says. “He’d want to wander around, but he tripped everywhere and ran into things.”
But no one knew why this was happening. The town was isolated and most people there had never seen a doctor. Then a few years back, a new road was built. Parán started to export peaches. Mining companies began sending in workers to look for gold and silver.
Then the doctors started to arrive. They were sent to Parán by a mining company, as kind of an outreach effort, and locals hoped the doctors would give them glasses or medicine to fix their vision problems.
Instead, the doctors told them that the problem was a genetic condition called Retinitis Pigmentosa. Bit by bit, it knocks out the cells in the retina, like pixels going out on a computer screen, until one day everything goes totally blank.
The condition is caused by a mutation on the X chromosome, so while women can carry the defect, it’s usually the men who go blind.
Ricard Fujita was one of the doctors who visited Parán. He says there’s no cure for the disease, but it’s still important for locals to know about it.
“They will have the problem, something that no one right now can stop, so I think it’s better to prepare them,” he says. “This is a poor people; we can look for ways to help them.”
Fujita says he and other doctors hope to get funding to return, to keep doing research. But many people in Parán say they feel like the doctors gave them this life-changing information, and then just vanished.
Some even say that having the information made things worse. Astidia Palomares, Jessica’s mother, says other villages now think of Parán as a town full of blind people.
“It’s sad, and pathetic,” Astidia says. “The town had gotten known for growing peaches but now everyone knows the town because of these children who are going blind.”
She says now, some people from the surrounding area make fun of Parán. They say young people from Parán shouldn’t marry anyone outside Parán and if they do leave, they should go far away.
Before the doctors came, Astidia’s other daughter, Abigail, married a man from another town. And when the doctors announced the blindness was something that was inherited, her husband’s family had a lot to say about it.
“It started during a conversation when we were all having lunch with his siblings. His brothers said to him, ‘Your child is going to be blind.’ And he said, ‘If this child is blind, I’ll go have kids with another woman.’”
At first, Abigail thought he was joking. But it wasn’t just that one time. He started to talk about it all the time; sometimes when they were with other people, sometimes when it was just the two of them.
“He said it like this: if my child is blind, then why keep going? It’ll be better if I leave you to have a child with another woman, so that child can take care of the blind son. Because how will my son get around if he can’t see?”
Abigail still hopes it was a joke. But she says she feels like her husband blames her, as if she’s at fault. Now, she figures all she can do is to stay quiet and hope for the best. She often thinks about what it was like before the doctors and journalists came around asking questions, when Parán was just an isolated town that grew peaches.
“It was made known that here that there’s just a bunch of blind people here,” Abigail says quietly. “But now that there haven’t been any doctors or journalists around for a whil,e time passes, things get forgotten. And since they’ve stopped coming, we just sort of forget too.”
A few weeks after we last saw her, Abigail gave birth, to a little girl - which means that though the baby could be a carrier, she won’t develop the disease.
This story was produced in collaboration with journalist Marco Avilés and Radio Ambulante.