Fatal Familial Insomnia. This disease is one of the strangest to understand. Not only because it is rare and occurs to a handful of families throughout the world, but because the symptoms are critical and eventually leads a person to insanity and death. Fatal Familial Insomnia, or FFI, is basically a genetic disease that brings permanent insomnia to its victim.

From Wikipedia:

The age of onset is variable, ranging from 35 to 60, with an average of 50. However the disease tends to prominently occur in later years, primarily following childbirth. The disease can be detected prior to onset by genetic testing. Death usually occurs between 7 and 36 months from onset. The presentation of the disease varies considerably from person to person, even among patients from within the same family.

The disease has four stages, taking 7 to 18 months to run its course:

1. The patient suffers increasing insomnia, resulting in panic attacks, paranoia, and phobias. This stage lasts for about four months.
2. Hallucinations and panic attacks become noticeable, continuing for about five months.
3. Complete inability to sleep is followed by rapid loss of weight. This lasts for about three months.
4. Dementia, during which the patient becomes unresponsive or mute over the course of six months. This is the final progression of the disease, resulting in death.

Other symptoms include profuse sweating, pinprick pupils, the sudden entrance into menopause for women and impotence for men, neck stiffness, and elevation of blood pressure and heart rate. Constipation is common as well

The following documentary follows a family’s journey into the investigation of the disease that has claimed several members. It’s a moving documentary. I couldn’t even begin to imagine the immense pain and psychological damage of being awake for more than 6 months.

I think we’ve all been there. Being awake for 48 or 36 hours brings upon strange and unpleasant hallucinations and involuntary muscle spams. Reality becomes infused with hallucinatory images. Your body will succumb to short narcoleptic instances.

Years ago I helped a friend move from California to Minnesota. This was during the winter of 2002, so you could imagine the dangers of driving through the icy roads across the U.S.
During the trip, I found myself behind the wheel of his ’94 Honda Civic early one morning, around 2am. We were just heading into Kansas, I believe. My friend was knocked out in the passenger seat and I had been up for 30 hours. With no hotels in sight or any rest stops near, I continued driving through a dark and desolate highway. I remember clearly passing a barn and then, as if I had taken LSD or some other hallucinogenic drug, I saw a great big tree appear in the middle of the road. It was as wide as both lanes, tall and bare. No leaves. Just its roots sticking out from the ground and it’s claw-like branches reaching out and around our car. I didn’t stop, although I did slow down to maybe 20 miles per hour. The tree just kept floating in free space. I thought it was odd, but didn’t make the connection to anything…it was as if I had lost touch with reality. Then, all of a sudden, a cartoon turtle, about 4 inches big runs using two legs (bipedal) from one end of the windshield to the about the middle. It then tripped and feel on its stomach. The cartoon turtle then lifted it’s head and turned and stared at me. At that point I slammed the brakes and pulled off to the side of the road.

We spent a freezing night, crammed in the car on the side of a lonely highway in the middle of America.

Although the story is funny when I tell it to people, what I was feeling was not. I could feel my body almost shutting down. This is why to me, Fatal Familial Insomnia seems to be one of the scariest diseases out there.

I don’t know the current research into FFI, but does anyone know how effective medicinal marijuana is for treating severe cases of insomnia like FFI? I’d be interested to know if anyone has tried administering weed for those few unfortunate people who have this disease.