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Rare disease: teenagers sometimes sleep for a week without waking up
A young woman from the UK sometimes sleeps for several days after a wet night. Deep sleep can last up to a week. The 18-year-old suffers from the so-called “Sleeping Beauty Syndrome”, a disease that has not yet been cured.
Sleep for days without getting up
When Hermione Cox-Denning comes home from a wet night, she sometimes falls into a deep sleep that can last up to a week. The 18-year-old from Wales doesn't even wake up to eat or pee. And even without the consumption of alcohol, the woman was suddenly suddenly exhausted years ago. She now knows that she is suffering from a rare disease that has not yet been cured.
Doctors initially thought of depression or flu
According to a report by the British newspaper "The Sun", Hermine Cox-Denning from Aberystwyth (Wales) began to develop sudden fatigue three years ago, which was so severe that she spent whole days sleeping.
At first, the doctors were amazed and suspected a bad flu behind their extreme tiredness.
Depression or psychological problems were also considered as triggers.
But in November 2017, after extensive tests, the "Little Levin Syndrome" (KLS) was diagnosed. The rare disease is also known as "Sleeping Beauty Syndrome".
Extremely long sleep periods
"Little Levin syndrome (KLS) is a rare neurological disease with an unknown cause," says Orphanet, a database for rare diseases.
According to the information, the disease begins on average at the age of 15 and affects more men than women.
“The patients go through 7-19 neurological episodes, each 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, the patient experiences hypersomnia (sleepiness). The sleeping periods last 15-21 hours a day.
Those affected "are then cognitively limited (apathetic, confused, slowed down, amnestic) and have a specific feeling of derealization (dream-like state with changed perception)".
According to Orphanet, sleep, wakefulness and eating habits between episodes are "surprisingly normal, but patients with KLS have an increased body mass index."
According to the information, the mean duration of illness is eight to 14 years. Then the rare disease, for which there is currently no therapy, usually disappears.
"A longer period of illness is observed in men, patients with hypersexuality and when the disease begins after the age of 20".
Alcohol as a trigger
After the diagnosis, Hermione Cox-Denning found that alcohol was one of the biggest triggers for the unusual conditions.
"It took me a long time to find out what triggered it. I knew that it was not stress and I could not see any particular food pattern, ”said the Welsh woman to the“ Sun ”.
At some point she noticed that she often had an episode after drinking alcohol the day before.
Now she knew that she could have a drink or two, but not more, otherwise she would fall into deep sleep for days. "I'm like the real Sleeping Beauty," said the 18-year-old.
Young woman wants to educate about rare illness
But she is also worried that the KLS will affect her future. According to the newspaper report, the young woman still has her episodes regularly. Then she would sleep continuously for three days.
“It gets easier on the fourth day 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 Welsh woman hopes that this will also be the case for her.
To draw attention to the disease, she started blogging about her experiences on her YouTube channel. "I know that people can ignore the disease and think I'm just lazy," said the 18-year-old.
"I would like to comment on this in order to raise awareness and promote more research on the disease." (Ad)