For the first time, it seems plausible that progeria—a rare disease of rapid, brutal aging—could be cured. Dhruv Khullar reports on a new gene-editing treatment and spends time with a twenty-two-year-old living with the disease. Plus:
At twenty-two, Kaylee Halko has already lived longer than most people with progeria.Photographs by Logan White for The New Yorker
How an Ultra-Rare Disease Accelerates Aging
Teen-agers with progeria have effectively aged eight or nine decades. A cure could help change millions of lives—and shed light on why we grow old.
By Dhruv Khullar
In 1996, Leslie Gordon, a biologist and a pediatrics resident at a hospital in Rhode Island, gave birth to a son, Sam. For a few months, Sam seemed healthy. But Gordon and her husband, a pediatric emergency physician named Scott Berns, soon started to feel that something was wrong. Sam’s skin looked tight, shiny, and veiny. He lost hair and was hardly putting on any weight. Doctors couldn’t explain why. “It was driving me crazy,” Gordon said. “They’d say, ‘Oh, he’s small, but you guys are small, too.’ ” One evening, a colleague of Berns’s, Monica Kleinman, came over for dinner and looked across the table at Sam. “Something just clicked in my mind,” Kleinman told me. She’d seen features like Sam’s in a textbook. A few days later, she told Berns that Sam might have a rare, fatal condition called progeria. “It was one of the hardest things I’ve ever had to do,” Kleinman said. A specialist in New York confirmed the diagnosis. “Within a week, it was clear that there was nothing out there,” Gordon told me. “No research. No treatments. No hope.”
Progeria, which derives from the Greek for “early old age,” was first described in the late nineteenth century. It is a disease of rapid, brutal aging that is thought to afflict fewer than one in every four million babies. By the time children with progeria enter their teen-age years, their bodies have effectively aged eight or nine decades. They have a distinctive appearance: small, wizened, and bald, with wrinkled skin, rigid arteries, stiff joints, and weak bones. Many die of heart attacks before their fifteenth birthday. There are estimated to be about twenty people living with the condition in the U.S. and several hundred in the world.
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