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Looking Ahead

7 September 2020 8 min read

Not only do children suffering from albinism have to protect their skin from the sun, their eyes are also sensitive to the light and suffer from visual impairments. That’s what prompted European experts to support a home in Tanzania where they could examine the albino kids. They took with them 166 pairs of glasses equipped with special filters – and the hope of helping the kids become more independent.

A boy with albinism trying to read a school book with a special visual aid.
Many kids suffer from limited visual acuity and spatial vision, so they often need visual aids.

At first they did not even want to put the glasses on – the polished lenses looked far too valuable, and the frames just beautiful. The kids were scared of scratching the glasses while playing – or perhaps even damaging them. So they decided to keep them indoors, safe and sound, and only wore them on special occasions – almost like a precious Christmas bauble. That’s no longer the case. Here in Tanzania, glasses that offer UV protection are seen as a luxury product and are certainly not taken for granted. But the kids living at the home know that if a pair of glasses is damaged, all will be lost. The Ruta de la Luz Foundation and ZEISS have already sent optometrists out to Kabanga on two occasions to provide the kids with free glasses.

Seeing people help the kids was one the most beautiful experiences of my life.

María Mejías

ZEISS Customer Services, Madrid Spain

People who suffer from albinism are still under threat

People with albinism have a defective gene that causes their skin to turn white. They are born with a sensitivity to light and have to protect their skin very well from the sun. They often get sunburn and later fall victim to skin cancer. Many of them find it almost impossible to open their eyes outdoors. Both parents must be carriers of the defective gene in order to pass it on to their child. In Europe and North America, one in every 20,000 kids is born albino; in Tanzania, one in 1,400 is born with the defective gene – but that’s not the only reason the kids in Kabanga need special care.

Kids with albinism in Tanzania are still under threat: medicine men, witch doctors and superstitious townspeople consider them ghosts and believe their limbs will bring riches and good fortune. They are hunted time and again; newborns are often killed shortly after they’re born, their body parts sold off to the highest bidder. They are the village outcasts.

That’s why homes have been set up, like this one in the Kigoma region, where some 300 children live: this is a place where they are well looked–after and can call home. It’s the only real family most of them have ever known.

People suffering from albinism don’t just have less melanin in their skin, they also have to endure visual impairments and spatial vision, short- or long-sightedness. This has prompted ZEISS to join forces with the Ruta de la Luz Foundation to raise awareness about the kids in Kabanga. For two consecutive years, optometrists have been examining these kids free of charge and supplying them with glasses so they can see better and, more importantly, fully protect their eyes from the sun’s harmful rays. 647 eye exams have already been performed, and glasses with special filters supplied for light-sensitive eyes.

Eye exams are a top priority – 647 have been performed in Kabanga alone.
Yamila and Biko learning how to use special visual aids.
The kids need special glasses that protect them against the sun’s harmful rays.

María Mejías was able to communicate very well with the kids.
The kids in Kabanga can now take control of their own future.

“I spent the first few days in tears”

“Seeing people help the kids was one the most beautiful experiences of my life,” says María Mejías, who came along to Tanzania with us last December. Mejías works in Customer Services at ZEISS Vision Care in Madrid, Spain. Before traveling to Africa, she took part in various projects in India, Ethiopia, Algeria and in the Philippines. But no trip was as intense as the one to Kabanga. “I spent the first few days in tears,” she says. “It was so touching to see how the kids live at the home.”

They were very loving and caring, no matter what medical problems they had. Some of the kids are mentally handicapped or mutilated, others deaf or mute. Take 10-year-old Letizia. Shortly after Mejías’ arrival, the child approached her and never left her side. Even though they couldn’t communicate – Mejías doesn’t understand sign language – they understood each other. This was a whole new experience for Mejías.

In the 16 days that Mejías and her colleagues spent there, they realized that many of the albinism kids suffer from nystagmus as well as from infections known to cause ingrown eyelashes. For this reason, proper hygiene and eye care training is high on the agenda, as is learning to use glasses correctly.

“When the kids put on their new glasses for the first time, some of them burst into tears of joy,” recalls Mejías. Emotions were running high – and she’d be delighted to return to Tanzania to help the children. The new glasses allow them to determine their future in the country: they have decided they will learn to read. Without the glasses, many of them would have no access to any sort of education.

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