There are times that fairy tales and real life cross paths. A real-life sleeping beauty is now talking of how she has been trapped in her own version of the child’s story. Helen Waterson is a 36-year-old who suffers from a rare disorder that sees her sleeping for 21 hours a day. To be awake for three hours, she needs to take heavy drugs.
“At least in the fairy tale she got to wake from her sleep,” she said, talking about her condition. She added, “I go through life either sleeping or feeling like I’m sleepwalking. I’ve missed all the important moments of my life. I don’t have a social life; I don’t have a love life. With this illness, you don’t live, you just exist.”
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Helen is living with Kleine-Levin syndrome, which is also called the Sleeping Beauty syndrome. It has no known cure and is quite rare, affecting only about 1,000 people worldwide. The symptoms of the condition include constant exhaustion and constant agony. She is unable to do more than sit on the sofa, struggling to stay awake. The doctors believe that her condition has also affected her long-term memory.
If she looks through her family album, she doesn’t remember the birthdays, holiday, and other special occasions that she attended. She sees her pictures but doesn’t recall posing for those moments. She’s unable to remember milestones in her own life like her first kiss or first day of school. Now she is unable to store new memories that she can look back on in her future. Recently, she had to resign from her mortgage manager post because of her condition. She is currently living alone with her two dogs.
Most days, she is too tired to do anything more than watch television before she dozes off again. She rarely goes out of her house, relying on her mother to do the shopping for her. Even after sleeping for 21 hours, Helen doesn’t feel rested and struggles to stay awake.
Diagnosed with Kleine-Levin Syndrome
Her dog Sooty moves her arm to wake her up. If that doesn’t work, her other pet Barney will bark until she gets up. Once she is awake, it can take 10 or more minutes for her to be fully conscious. Regaining mobility in her arms after a long slumber is tough because the muscles become stiff and painful after such a long rest.
Helen explains, “My body is often so stiff and exhausted I can’t do the washing up, let alone socialize. Some days, I just lie on the sofa because my muscles are so sore. I can’t even go out to celebrate my mum’s birthday next month because it will be too exhausting.”
When she walks around her bungalow in Aberporth, South Wales, she leans on Barney to support her. Helen was only diagnosed with the condition four years ago, but she has suffered from this ailment since she was young. As a child, she was exhausted all the time, and people would think she was lazy and stupid.
She says, “One of my only childhood memories is going to a restaurant with my family and I was exhausted. I was looking at the menu and tried to ask what type of fish they were serving. But I was so tired I couldn’t get my words out properly and asked, ‘What is a fish?’ Before I could correct myself, my family started laughing at me and it became a joke that ran for years.”
When she was a teenager, she would spend breaks from school asleep, only waking up to eat, drink, or use the bathroom. Meanwhile her friends were off enjoying parties, the outdoors, and summer vacations.
She only has broken memories from her past—like a collection of scenes from a film where she can’t recall what happened in between those times. In the 1980s, Sleeping Beauty syndrome was unknown, so it was impossible to get a proper diagnosis.
Despite having to struggle with her condition, she was able to graduate from university and find a good job. In February 2009, she caught the flu and was asleep for three weeks. After that, she underwent several tests for narcolepsy and different infections. She was misdiagnosed with depression and given antidepressants. It was only in 2010 that she was told that she had KLS. The medical tests showed that she could be in a deep sleep within five minutes when it normally takes two hours for an average sleeper.
Getting her diagnosis was the first step to finding help. She was told there is no cure but that she could manage her ailment with medication. Helen is an extreme case of KLS and is only able to stay awake because of medication. The side effects of the medicine mean she has extreme muscle pain, facial twitches, and poor coordination. She continues to take the drugs because without them, she would barely be able to awaken.
She said of her condition, “Six months ago, I tried reducing my medication by one pill, and I was only awake for half-an-hour that day.”
Helen has spoken to reporters so that she could raise awareness of her condition. She has accepted that due to her condition, she would be living her life alone. She added, “I am constantly in pain and, most of the time, too exhausted and stiff to move. I can’t expect anyone to want to be in a relationship with someone like that. I really miss the companionship and I’d love to be a bride one day, but I can’t get married without a man. I’ve accepted being by myself because I feel I’ve been by myself in one way or another my whole life. Unlike the fairy tale, I won’t be getting a happily ever after.”