“I want to be able to dance again”

Mariam Zakari was answering our questions about her eye problems when we noticed her eyes and nose start to stream.

Her animated chatter stopped, her smile shut down and she stepped back to feel her way along the wall with her hands. We could hear her painful retching from behind her home.

The 75-year-old was suffering from an advanced form of eye disease trachoma, a bacterial infection that can eventually cause scar tissue to build up under the eyelids, turning them inwards until the eyelashes scrape agonisingly on the eyeball. She couldn’t speak, she couldn’t see and the pain was overwhelming her. She was showing us what trachoma felt like. It was an agony that stopped her being able to function or get on with her life.

We met Mariam in July when, along with a team from BBC Africa, we witnessed the first round of trachoma operations in Benin, West Africa, delivered by the ministry of health and Sightsavers under the new Accelerate trachoma elimination programme. The treatment was broadcast by BBC flagship health show ‘La Vie’ on several West African TV channels.

Mariam was one of the patients we visited at home before her operation to hear how the disease affected her life. We heard again and again how trachoma robs people of their independence, so their families and communities need to rally round to support.

It was a key time in the farming year: the season of collecting shea nuts. We passed many women pounding the nuts with a big stick, softening them to make butter to eat and sell. The trachoma patients told us they couldn’t help with the work – first, because pain made it impossible, and second, as Bona Woure Dafiya told us, because no one wants to buy food from someone with streaming eyes.

Bona, 50, and her daughter-in-law Mannou live next door to each other in Gbari village in the Nikki region. They featured in the BBC show and their touching tale showed the lengths families go to support those with this devastating disease.

Bona said when her eyelashes started to scrape her eyeball, she would shout across to Mannou and ask her to come running to pluck the offending eyelashes out. She explained: “As soon as the eyelashes touch, the watering happens. Water comes from my eye and nostrils, and I cannot see. At that moment, I can’t do anything.”

Mannou, 22, had been helping since she was a teenager, when she had the idea of using ash from the fire to help Bona. She said ash is used to clean fish by removing ‘stickiness’, and realised it could do similar for eyelashes. It helped to separate the lashes and increase her grip on them, making it easier to pluck them out.

She said: “When Bona’s eyes start watering I can feel the pain myself, in my body. I will be so happy when she can see again.”

Although there was an overwhelming sense of community in the villages we visited, not everyone had a Mannou. Some were more isolated, unable to get the help they needed. Others received it, but it was not enough.

Orou Baye Adama, 75, once a leading traditional dancer in the area, also featured in the BBC show. She had had trachoma for 40 years and it was advanced. Despite support from her loyal sons, she could not live the life she yearned for.

“When the pain starts, I do not know what to do or how to behave as the headache is there,” she explained. “It is so painful I do not know where to put my head. Everything stops. I can’t see.”

The glare of the sun hurt her eyes, as did bending down to look for nuts, so she was forced to stay inside and lie down for hours. She told us how she longed for independence, to be able to walk in the sun and dance again.

For patients like Orou, Bona and Mariam, the treatment provided in the rural health centre nearby proved to be life-changing. There was a buzz in the air as nine patients and their carers waited to be dressed in scrubs and given a pre-surgery check, as little white stickers were placed next to whichever one of their eyes needed attention.

Seven of those taken into the small operating room were women (commonly more affected by the disease). One was the local king of the Biro district, and most had surgery on both eyes.

Some seemed fearless, just eager to have surgery. Others were nervous from the mistaken fear that their eyeballs might be removed, that they could be left without any vision, or that they would need more recuperation than they had time for during the busy farming season.

But those who were nervous showed it by stoic silence as the health team bustled, making everything sterile, getting everything ready. Each patient was taken in one by one, then 30 minutes or so later they reappeared, with bandages over transformed eyes.

The next day, after a night of healing, it was time to remove the bandages. Eyes looked fragile, but Bona assured us there was no pain, just anticipation at her independence being returned.

“I am very happy about the surgeries,” she explained. “I’m going to fry bean cakes for people to buy, to show how I can see forever. I will also have a feast with all my friends and family. It will be nice to be social again.”