Cheryl Dinges is a 29-year-old Army sergeant from St. Louis. Her job is to train soldiers in hand-to-hand combat. Specializing in Brazilian jujitsu, Dinges says she is one of the few women in the Army certified at level 2 combat. Level 2 involves a lot of training with two attackers on one, she explains, with the hope of “you being the one guy getting out alive.”
Dinges may face an even harder fight in the years ahead. She belongs to a family carrying the gene for fatal familial insomnia. The main symptom of FFI, as the disease is often called, is the inability to sleep. First the ability to nap disappears, then the ability to get a full night’s sleep, until the patient cannot sleep at all. The syndrome usually strikes when the sufferer is in his or her 50s, ordinarily lasts about a year, and, as the name indicates, always ends in death. Dinges has declined to be tested for the gene. “I was afraid that if I knew that this was something I had, I would not try as hard in life. I would allow myself to give up.”
FFI is an awful disease, made even worse by the fact that we know so little about how it works. After years of study, researchers have figured out that in a patient with FFI, malformed proteins called prions attack the sufferer’s thalamus, a structure deep in the brain, and that a damaged thalamus interferes with sleep. But they don’t know why this happens, or how to stop it, or ease its brutal symptoms. Before FFI was investigated, most researchers didn’t even know the thalamus had anything to do with sleep. FFI is exceedingly rare, known in only 40 families worldwide. But in one respect, it’s a lot like the less serious kinds of insomnia plaguing millions of people today: It’s pretty much a mystery.