Sleeping Beauty Syndrome Young patient sleeps for an entire week after being in the alkolized state

Rare Disease: Teenagers sometimes sleep a week without waking up once

A young woman from the UK sometimes sleeps for several days after a wet night. The deep sleep can last up to a week. The 18-year-old suffers from the so-called "Sleeping Beauty Syndrome", a disease that can not be cured so far.

Sleeping for days without getting up

When Hermione Cox-Denning comes home from a humid night, she sometimes falls into a deep sleep that can last up to a week. The 18-year-old from Wales does not even wake up to eat or pee. And even without the consumption of alcohol, the woman's sudden and exhausted moods came up years ago. She now knows that she suffers from a rare disease that hitherto can not be cured.

A young woman from Wales sometimes sleeps for days without waking up. Especially after drinking alcohol, she falls into the deep and long sleep. She suffers from "Sleeping Beauty Syndrome". The rare disease is not curable. (Image: mashe / fotolia.com)

Doctors initially thought of depression or flu

Three years ago, Hermione Cox-Denning from Aberystwyth, Wales, began to develop sudden states of exhaustion so severe that she spent entire days sleeping, according to a report in The Sun newspaper.

At first the doctors were dumbfounded and suspected a severe flu behind their extreme fatigue.

Also, depression or mental health problems were considered as a trigger.

However, in November 2017, after extensive testing, the "small levin syndrome" (KLS) was diagnosed. The rare disease is also called "Sleeping Beauty Syndrome".

Extremely long sleep periods

"Small levin syndrome (KLS) is a rare neurological disease of unknown cause," says Orphanet, a rare disease database.

The disease is said to start at an average age of 15 and affects more men than women.

"Patients undergo 7-19 neurological episodes, lasting 10-13 days and occurring every 3.5 months. This distance is shorter when the disease begins in childhood, "the experts report.

During these episodes, patients experience hypersomnia (somnolence). Sleep periods last 15-21 hours a day.

Cognitively restricted

Affected "are then cognitively restricted (apathetic, confused, slowed down, amnestic) and have a specific sense of derealization (dream-like state with altered perception)".

According to Orphanet, sleep, wakefulness and eating habits between episodes are "remarkably normal, but patients with KLS have an elevated body mass index."

The reported duration of the disease is eight to fourteen years. Then the rare disease, for which there is no therapy, usually disappears.

"Prolonged duration of illness is observed in men, patients with hypersexuality and onset of disease after the age of 20".

Alcohol as a trigger

Hermione Cox-Denning discovered after diagnosis that alcohol is one of the biggest triggers for the unusual states.

"It took me a long time to figure out what's the trigger. I knew it was not stress and I did not see any particular food patterns, "the Welshman told the Sun..

At some point, she realized that she often had an episode when she drank alcohol the day before.

Now she knew that she could approve a drink or two, but not more, otherwise she would fall asleep for days. "I am like the real Sleeping Beauty," says the 18-year-old.

Young woman wants to enlighten about rare disease

She also worries that KLS will affect her future. According to the newspaper report, the young woman still has her episodes regularly. Then sleep for three days continuously.

"On the fourth day it gets easier and I get up to go to the bathroom and have something to eat. After that, it takes about four days to get back to normal. "

Her neurologist said that many KLS patients notice that the frequency of their episodes decreases as they get older. Therefore, the young Welshman hopes that this will be the case with her as well.

To raise awareness of the disease, she began blogging about her experiences on her YouTube channel. "I know people can ignore the disease and think I'm just lazy," said the 18-year-old.

"I want to go outside to raise awareness and promote more research on the disease." (Ad)