A woman and her husband are racing to find a treatment for her deadly genetic sleep disorder before symptoms set in.
Almost everyone has had at least one night where it’s been impossible to fall asleep. But Sonia Vallabh dreads those nights more than most. For her, insomnia is more than an inconvenience—it’s the first sign of the deadly disease that she and her husband, Eric Minikel, have dedicated their lives to studying.
Called fatal familial insomnia, or FFI, it’s an extremely rare genetic disease that causes progressively worsening sleeplessness. Difficulty sleeping soon turns into total insomnia, causing rapid physical and mental deterioration and, inevitably, death—within a year, usually sooner.
“It’s an unbelievably swift and brutal way to die,” said Vallabh said.
Four years ago, she watched helplessly as her mother hovered in a twilight state—stuck somewhere between wakefulness and sleep—before dying at age 52.