The Family That Couldn't Sleep: A Medical Mystery by D. T. Max

Author:D. T. Max [Max, D. T.]
Language: eng
Format: epub
ISBN: 9781588365583
Goodreads: 7406497
Publisher: Random House
Published: 2006-09-05T06:00:00+00:00

When Gambetti and Lugaresi published their findings in The New England Journal of Medicine in 1986, they expected the medical world to be excited, but they did not count on the sharp-eyed Italian press picking up the story as well. One paper ran a picture of Lugaresi and the top of Silvano’s head peeking out from under the blanket, where he had contracted into a fetal position near the end of his life. “Death comes as a liberation,” the paper’s correspondent assured readers. “Help Me, We Are Dying of Insomnia,” ran the headline on the front page of another. Articles spoke of a century-old family curse and of Silvano’s “interminable agony.” One paper said another family member was about to die, while another quoted Lugaresi as saying that with Silvano the curse had ended; the family was extinct. “Let’s hope that isn’t just a pious lie,” the savvy journalist concluded. The articles ran at the same time as a new and confusing ailment was afflicting the cows of Britain, turning that nation’s usually placid meadows into the stuff of Italian nightly news. There was no small amount of delight in watching the snooty British cope with their epidemic—it had happened often enough the other way around. When the mad cow scare reached Italy, as Lisi remembers, youngsters from their neighborhood came by mooing at her door.

In all this time, the family had still never heard of prions, and prion researchers had still never heard of the family: all that was known in the 1980s about FFI was that it was a genetic disease that destroyed the thalamus, but within a few years the two worlds, the world of FFI and the world of prions, would finally come together and real progress would be made in understanding the condition.

A few years after Beatrice’s birth, a cousin of Lisi’s named Lucia called Ignazio and told him that her sister was behaving oddly. Teresa was bumping into furniture as she walked around the house; she was also sweating profusely. Lucia added that her father and uncle had both died of a similar disease in the late 1970s; she knew her sister’s condition was not leukoencephalitis, as the doctors claimed, and she was tired of the denial that characterized her family’s approach to their disease. This was the first time her branch and Lisi’s had ever been in contact.

At Ignazio’s urging, Lucia took Teresa to Bologna. Of all the deaths the clinicians witnessed, hers may have been the saddest: she was just thirty-six years old and had two little boys. In her first videotaped moments at the clinic, she seems cheerful, dressed in a scarlet sweater, with a soft face and full lips. Even a few months later, when her head inclines forward in a vain attempt to sleep, if a researcher taps her, she snaps to and smiles. But the disease is implacable. Over time it strips away the softness of her cheeks. Enormous black circles develop around her eyes with their pinprick pupils.

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