![]() In the case of FFI, these proteins mostly home in on two locations within a central brain structure: the thalamus. “As these prions spread, they’re killing brain cells in their wake,” Vallabh said. The abnormal prion converts a healthy one, creating two abnormal ones. When that change happens, it begins a domino effect. We’re all producing it all the time, and it’s part of normal biology, but it’s capable of undergoing … a change in shape.” ![]() “There’s this one protein that’s sort of at the heart of this disease, the prion protein,” Vallabh explained. His mind instantly shifted to a group of diseases caused by a protein known as a prion. Gambetti had seen the spongelike pattern before – just not like this. “At that moment, I knew what FFI probably was,” he said. But one small structure, near the center of the brain, looked “like a sponge,” he said. Pierluigi Gambetti, the pathologist and a professor at Case Western Reserve University, found that most of the brain tissue appeared normal. Elio Lugaresi, shipped his brain tissue to Lugaresi’s former student – a pathologist in the United States who could take a much closer look at what was going on.ĭr. “This is one of the few (chances) you have to discover what is the cause of the curse of my family.” “In few months, I’m going to die,” Silvano told Cortelli. Courtesy Fabian, Hope's ex-husbandĪ 'disorder of deception': When a mom makes her child sick Hope, who pled guilty to charges of child abuse, had three children with her ex-husband. No matter what, his brain didn’t allow him to reach the deeper, restorative stages of sleep. In other videos, he is lying in bed, pretending to comb his hair or button an imaginary shirt. “You are falling asleep, and then you wake up.” Pietro Cortelli, one of the researchers Silvano approached at the University of Bologna. “Exactly what you can feel if you get a sleep attack when you are driving,” said Dr. Just as it appears he’s dozing off, he jerks to a half-wakefulness. In some of the videos, his eyes are half-open, staring into space. Silvano went to the University of Bologna, where researchers filmed his final months. She has lost many relatives to the disease, including her father, brother and sister.īut when another family member, Silvano, started showing signs of the disease – he began sweating profusely, with pinpoint pupils – he decided it was time for his family to stop suffering in silence. A brutal suffering,” said Lucia, 63, one member of the Italian family. Doctors listed their causes of death as “nervous exhaustion,” encephalitis and even schizophrenia, he said.ĭoctors thought she was psychotic, but her body was attacking her brain The family, who prefer not to use their surnames, had kept the disease a family secret for generations, Max said. Max, a writer for the New Yorker and author of the book “The Family That Couldn’t Sleep.” Six or seven of them would die from the disease,” said D.T. Much of what doctors first learned about the disease comes from a family in Venice, Italy, who have suffered from it for over 200 years. In 1986, this disease was given a name: fatal familial insomnia, or FFI. Shortly thereafter, Vallabh’s father, a doctor, pulled her aside during a visit home. Her mother died in December 2010 at age 52. “How could we ask this person to keep going?” “She looked like she was being tortured,” Vallabh said. Courtesy Sonia Vallabh and Eric Minikelīy fall 2010, she was on life support, with needles, tubes and wires coming out of her. Kamni Vallabh, left, was planning her daughter Sonia's wedding less than a year before she came down with a mysterious, debilitating illness. “She was fitful and couldn’t really tell you if she’d been awake or asleep,” Vallabh said. Vallabh’s mother began having trouble with her eyesight, and her strange symptoms progressed to the point where she couldn’t recognize her daughter. ![]() “It was a small Indian wedding, by which I mean 300 people,” Minikel said. Just months before, her mother had been healthy and vibrant, planning Vallabh’s wedding to Eric Minikel. Sonia Vallabh was in her second year at Harvard Law School in 2010 when her mother got sick. ![]() The same thing happened to their grandmother – and they learned it could be passed down to them. “You get into a perpetual stage of a dream.” “You’re in this gray area, in this limbo land between being awake and being asleep,” Webb said. CNNīut perhaps most strikingly, their mother couldn’t fall into a deep sleep. Hayley and Lachlan Webb learned that their mom's illness could be inherited. ![]()
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