On Ending Blindness

Christian Guardino, sighted and singing. Photo by Brent Stirton, National Geographic, all rights reserved.

I spent much of last winter working on a story about what it might take to end global blindness. I’m tickled to see the result now on and inside the cover of September’s National Geographic. The four-section story is about determination in the face of tough odds. Here’s a snip from the first section, about gene therapy fashioned by a group led by Penn’s Jean Bennett, and one from the last section, about the extraordinary Namibian cataract surgeon Helena Ndume, who is possibly the most amazing person I’ve ever met.

Christian, the doctor told Elizabeth, had a retinal disease called Leber congenital amaurosis (LCA). His vision, already bad, would never significantly improve. Nothing could be done. The boy would see little of the world and would always walk, once he learned how, with a cane.

Christian did need a cane, and his mother’s guiding hand, when in 2012, at age 12, he first visited a clinic run by the University of Pennsylvania’s Scheie Eye Institute. Yet this January he walked through the institute’s main building cane free and seemingly fearless. Joking and chatting, the teen led a klatch of Ph.D.’s, M.D.’s, lab techs, and me through the airy lobby. He marveled at the towering atrium, the shiny balconies where people sat having coffee.

“Whoa!” he said as we neared the building’s exit—for before us an enormous revolving door turned its huge blades. His mother was some distance behind; he was on his own. Christian neither stopped nor paused. He walked calmly through the opening of the spinning wedge of steel and glass and held his pace as one glass wall closed behind him and another smoothly swung out of his way. He stepped into the sunlight.

Christian Guardino could see. Everything that had posed an obstacle before—light and dark, steel and glass, the mobile and the immovable—now brought him pleasure. The world had opened before him.

Helena Ndume dancing with one of the 30,000 patients she has given sight to. Photo Brent Stirton, National Geographic, all rights reserved.

Helena Ndume dancing with one of the 30,000 patients she has given sight to. Photo Brent Stirton, National Geographic, all rights reserved.

Cataracts, a disease of poverty, cause half of all blindness on Earth. In the developed world, people with cataracts routinely get treated as soon as they have trouble seeing the TV. In the developing world, people with cataracts routinely go blind. The treatment everywhere is simple: Get clinician and patient in the same room, prep the latter, spend 15 to 20 minutes replacing the cloudy natural lens with a clear artificial lens, do a post-op checkup. In developing countries, treatment usually costs $15 to $100. Yet it reaches few who need it.

Working with Namibia and other African governments and the nonprofit SEE International, Ndume is trying to fix this by running “cataract camps.” At these gatherings in underserved areas, Ndume and other surgeons operate on up to 500 people a week. The United Nations last year recognized Ndume’s “service to humanity” with its inaugural Nelson Rolihlahla Mandela Prize.

It’s a fitting honor for someone who 41 years ago, as a girl of 15, left a different kind of darkness when she fled the apartheid that the South African government had imposed on Namibia. With three friends she made her way to a camp in Angola run by the Namibian resistance movement SWAPO; survived a machine gun attack soon after she arrived; braved hippo-infested rivers and hostile helicopter patrols to find safety in Zambia; told SWAPO she’d like to go to fashion school but was sent instead to medical school in Leipzig, Germany; and there married a countryman who soon after was killed in Angola. She bore their baby alone, finished her ophthalmology training, rejoiced when Namibia won its independence in 1990, and returned for good in 1996 with her child, her education, and a determination to help those who could not see.

The rest is here:Why There’s New Hope for Ending Blindness

Many thanks to editors Jamie Shreeve and Patty Edmonds and to the enormously talented photographer Brent Stirton, whose gorgeous photos grace the story, and whose partnership on this story was a huge blessing. Most of all, all my heart to the many people who shared their lives and work with me for this story — the researchers, patients, family members, and others, many who do not appear in this brief treatment, who helped me understand it. It’s hard to overstate my admiration for their generosity, courage, determination, humility, and good humor. Meeting such people, and hearing their stories and thoughts in person, is by far the most wonderful part of this splendid but difficult job.

If you like the story, consider subscribing to the Geographic. It’s wonderfully affordable, gorgeous, and your money will support the sort of extended reporting that a story like this requires.

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