"Sleeping Sickness" ◆ A Rare Disease That Goes Unrecognized

Chunichi Shimbun Morning Edition, June 9, 2006

Have you ever heard of a disease called narcolepsy? It causes sudden sleep attacks that lead to deep sleep, regardless of time or place. Because people with this condition may fall asleep in the middle of work or daily life, they are often misunderstood as being lazy or unmotivated. The incidence is about one in 2,000 people, but in Japan, it’s estimated to affect one in 600 — the highest rate in the world.

In the film My Own Private Idaho (1991, USA), River Phoenix plays a young gay man suffering from this illness. Abandoned by his mother at the age of 12, he moves from his hometown in Idaho to Portland and survives by selling his body. Because he falls asleep during stressful moments, he often angers his clients. One day, he meets a young man played by Keanu Reeves, and the two set out on a journey to search for his mother.

Narcolepsy often causes vivid hallucinations — somewhere between dreams and reality — when falling asleep or waking up. The film enhances this effect by depicting the Idaho landscape in a dreamlike, surreal manner. The protagonist, burdened by inner turmoil and heartbreak, sleeps with the innocence of a child. The result is a work that is both beautiful and sorrowful. River Phoenix, who was seen as the next James Dean, tragically passed away at the age of 23 due to a drug overdose just two years after the film’s release.

Narcolepsy was first identified in France in 1880. For a long time, its cause remained unknown. However, a Japanese researcher living in the United States discovered that the number of cells producing a substance called orexin in the brain is reduced in patients. This discovery opened new doors for treatment, which had previously been limited to symptomatic relief.

Although central nervous system stimulants can help ease the symptoms, living with this disease remains extremely difficult. Despite this, narcolepsy is not covered under Japan’s Services and Supports for Persons with Disabilities Act. As a result, people with narcolepsy in Japan suffer from a double burden: the challenges of treatment and the lack of public awareness.