Tellingly, it was primarily women and children afflicted by kuru, and primarily women and their children who consumed the deceased. Eventually, a team of anthropologists and scientists, including the American virologist Carleton Gajdusek, realized that the illness might be related to the Fore practice of funerary cannibalism. Nor was the condition inherited, as far as doctors could tell. Victims showed no sign of infection-none of the mucus, fever, or antibodies associated with a normal immune response. The Fore, an indigenous group, called it kuru, “to tremble.” No one who contracted it survived. In 1954, barely a year after James Watson and Francis Crick announced the discovery of the double helix, reports began to emerge from Papua New Guinea of a mysterious neurological epidemic. Vallabh with her mother, Kamni, at an apple orchard in 1984. They sat in on classes at MIT, trying to pass as undergraduates, and started a blog, which they used to organize their thoughts and speculate on therapies. “I had to go on Wikipedia to remember what dominant versus recessive meant,” he says. Sonia had taken a few biology classes in college, but Eric, a Chinese language major, had avoided them almost entirely, satisfying his curriculum requirement with a course called Cropping Systems of the Tropics. She and Eric became obsessed with learning more. Sonia had never imagined that so many people studied them, given their rarity. It was full of research on prion diseases. Not long after Sonia found out that she was a carrier of fatal familial insomnia, a scientist friend named Stevie Steiner gave her a thumb drive. “I had to keep focusing on the fact that I wasn’t sick now, and I probably wouldn’t be for a while,” she says. They spent the weekend together, trying to talk about other things. She called her father, who booked a flight to Boston. He reported the results without ceremony: “The same change that was found in your mother was found in you.” Sonia had perhaps a decade or two before she would begin to experience symptoms, but there would be no escaping the disease it killed anyone who carried it. With Eric by her side, she stepped into the doctor’s office. “If she was about to give life-changingly horrible news, she wouldn’t be in a good mood right now,” Sonia remembers thinking. In the waiting room, she glimpsed the genetic counselor laughing. On the morning she was to learn the outcome of her test, Sonia found herself clinging to superstition. The trip became a physical instantiation of their mental state: alone in a strange place, speaking only to each other. They never got over the jet lag and spent their nights wandering down side streets. The results wouldn’t come in for two months, so she and Eric went on their long-postponed honeymoon in Tokyo. It took weeks, but Sonia finally secured a test. What you can’t adapt to is something that keeps changing shape on you.” “You really want to hope that you’re negative, but the fear that you’re positive keeps interrupting, and it’s a constant psychological dialog,” she says. If a disease has no cure, their reasoning went, what’s the point in knowing? Isn’t ignorance bliss? But Sonia was adamant. Her doctors, genetic counselors, and even some of her family members recommended against it. Sign up for the Daily newsletter and never miss the best of WIRED.Īlmost immediately, Sonia decided that she wanted to be tested for her mother’s mutation. “She wasn’t scared so much as sad,” Sonia remembers. Sonia, who was 25 at the time and living in Boston, called her mother often and visited whenever she could. She had trouble sleeping and spent her rare moments of lucidity grieving for the burden she had placed on her family. By May, she couldn’t eat, stand, or bathe herself. She was distractible, easily confused when she misplaced the TV remote, she’d look for it in the pantry. Once a poet, Kamni could barely string a sentence together. But by her birthday, that March, it was clear that something was seriously wrong. She’d single-handedly organized her daughter Sonia’s wedding, 300 guests drinking and dancing in the family’s backyard in Hermitage, a tight-knit former steel town. The previous summer, Kamni had been in good health. Maybe the harsh western Pennsylvania winter-two record-breaking blizzards in as many weeks-was wearing her down. She was 51 maybe middle age was catching up with her. But in early 2010, when Kamni Vallabh first began to complain that her eyesight was failing, there didn’t seem to be much cause for concern. In retrospect, it might have been a clue.
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