Strange Sleeping Beauty Syndrome: Young patient sleeps most of her life

Rare illness 23-year-old American always has weeks of sleep
Especially on cold, gray days, many wish to be able to sleep as long as possible. Delanie Weyer from the USA sleeps for a long time - even for a long time - even without bad weather. The 23-year-old suffers from the so-called "Sleeping Beauty Syndrome" and is therefore repeatedly struck by weeks of sleep. The rare disease usually disappears after a few years. So far, it cannot be cured.

Young American sleeps up to 20 hours a day
Statistically speaking, people spend around a third of their lives sleeping, an average of eight hours a day. For the American Delanie Weyer, this is far from enough in certain phases. The 23-year-old suffers from “Little Levin Syndrome” (KLS), sometimes sleeping up to 20 hours a day. The rare disease is also called “Sleeping Beauty Syndrome” due to its symptoms. So far there is no cure.

Like hibernating
Delanie Weyer from the US state of Minnesota actually wanted to live an adventurous life: fishing, traveling, getting to know the world. But about five years ago, the 23-year-old happened on a school trip that could not be explained for years.

She suddenly became very tired and fell into a long sleep. Since then, she has had periods of two to five weeks in which she slept "like a bear in hibernation", reports the news portal "WCCO".

The young woman now knows why the extreme sleep phases occur: she suffers from “Kleine Levin Syndrome” (KLS), a rare disease for which there is currently no therapy.

Years of illness
"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 the Orphanet, sleep, wakefulness and eating habits between episodes are “surprisingly normal, but patients with KLS have an increased body mass index. The mean duration of illness is 8-14 years. A longer period of illness is observed in men, patients with hypersexuality and when the disease begins after the age of 20 ”.

Drowsiness during wakefulness
Delanie Weyer recalls how it all started with her: “When I was 18 I had my first episode, as you call it. I slept a lot and when I was awake I was delusional. ”In the past five years she has had four more“ episodes ”that she hardly remembered afterwards.

"I sleep everywhere, 15 to 20 hours a day. When I'm awake, I'm very dazed, delusional, just not really right in reality. I just have no motivation to do anything, I’m depressed and frustrated because I don’t know what’s going on. ”

During these phases, she says she only gets up to eat and drink and go to the toilet. The last episode lasted five weeks.

The illness was to blame for missing important events: "I missed Thanksgiving, I missed Easter, I missed my grandfather's 85th birthday and my 21st birthday because I was in one episode," said the 23- Year old.

Has nothing to do with laziness
Her mother Jean Weyer was also very worried. According to “WCCO”, she initially thought that her daughter might just be lazy or take drugs.

After Delanie Weyer had visited numerous doctors and therapists, Dr. Ranji from the "Minnesota Regional Sleep Disorders Center" finally made the diagnosis: "Little Levin Syndrome".

The psychiatrist had never diagnosed the disease before. “It's not because of any psychiatric problems, not because of bad habits or laziness. It's a brain dysfunction, ”said the expert.

Around 500 cases are known
According to Varghese, only around 500 cases have been documented so far, most of them in male adolescents. "We don't know what causes it. We suspect that it may be an inflammatory process in the brain, but so far no one has been able to confirm this, ”said Varghese.

It is good for the family that the diagnosis is now clear. While there is no cure, there are drugs that can reduce the length and intensity of episodes and the number of episodes.

For the next episode, the mother will take her daughter to the Sleep Disorders Center, where she will be monitored for a few days to find out more about what happens to her during an episode. This will also allow doctors to learn more about the rare disease. (ad)

Author and source information

Video: The Symphony of Sleep: Megan R. Weigel, DNP, APRN c, MSCN: June 2020 (December 2021).