Episode 156: The Family That Couldn't Sleep - The Venetian Curse

In the summer of 1983, a stylish Venetian man named Silvano stepped onto a cruise ship and felt his shirt suddenly soak with sweat for no reason. That single moment marked the beginning of a nightmare that would steal his sleep forever. For over 250 years, one Italian family had been haunted by a mysterious curse: a disease that slowly, relentlessly destroys the brain’s ability to sleep. Victims lie awake for months in a living hell of hallucinations and exhaustion, fully conscious as their bodies burn out and die. What began as a whispered “family disease” in 18th-century Venice was finally named Fatal Familial Insomnia — a prion disorder caused by nothing more than a single misfolded protein that turns the brain’s sleep switchboard into a graveyard of crumpled origami cranes. This is the haunting true story of a genetic curse that science still cannot stop, and the quiet courage of the families who choose to live in the shadow of knowing — or not knowing — their fate.

Sources:

Max, D.T. The Family That Couldn’t Sleep: A Medical Mystery. Random House, 2006.(The definitive book on the Venetian family’s 250-year saga and Silvano’s story.)

Prion Alliance. “About Prion Alliance & Our Mission.” prionalliance.org.(Nonprofit founded by FFI patient-scientists Sonia Vallabh and Eric Minikel.)

CJD Foundation. “Fatal Familial Insomnia (FFI).” cjdfoundation.org/fatal-familial-insomnia-ffi.(Leading U.S. patient-support organization for all prion diseases.)

Khan, Z. and Bollu, P.C. “Fatal Familial Insomnia.” In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing, 2024.(Most current peer-reviewed medical overview of FFI.)

National Organization for Rare Disorders (NORD). “Fatal Familial Insomnia.” rarediseases.org/rare-diseases/fatal-familial-insomnia.(Clear, family-friendly summary of symptoms, genetics, and history.)

Mastrianni, J.A. “Genetic Prion Disease.” In: GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle, 2021.(Gold-standard genetic reference for the PRNP mutation and prion mechanism.)

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