Curse of the Sleeping Beauty Syndrome
TTTP helps real life ‘Sleeping Beauty’ raise awareness over her rare medical condition which means she spends 21 HOURS A DAY asleep!
When Helen Waterson contacted us to raise awareness over a rare medical condition called ‘sleeping beauty syndrome’ that has left her living as a real life “Sleeping Beauty”, we knew a number of publications would be interested in speaking to her. But for Helen Waterson living with the syndrome, which affects just 40 people in the country, life is anything but a fairytale.
Incredibly, Helen kips for 21 hours a day and is only awake for three. The condition has had a devastating effect on her life. It has left the 36-year-old – who lives alone – unable to hold down her job, have a relationship or even recall her childhood.
When Helen flicks through the family album she does not recognise the little girl staring back and has no memory of the holidays, birthdays and Christmases contained in the images. She cannot remember her first day at school or her first kiss. And, tragically, the condition means she is unable to carve out the future life she hopes for.
Helen says: “At least in the fairytale Sleeping Beauty got to wake from her sleep. The real life version is the opposite. It should be called ‘living hell syndrome. I go through life either sleeping or feeling like I’m sleepwalking. I’ve missed all the important moments of my life.
“I do try to laugh about it because the alternative is crying and there aren’t enough Kleenex in the world for that. I don’t have a social life; I don’t have a love life. With this illness you don’t live, you just exist.”
It took 31 years for her to be properly diagnosed and she would regularly be told she was simply being hit by flu-like bugs. During her worst bout of the condition she was unable to get out of bed for 25 days. Eventually medics diagnosed her with Kleine-Levin Syndrome – an illness that only has 1,000 known sufferers on the planet and has no known cure.
Helen is one of the most extreme cases and is only able to stay awake with the aid of medication. But over time it has got worse and worse and now she is only able to function properly for three hours a day – the rest of the time she’s in a sleeplike state – meaning she has had to stop her job as a mortgage manager.
Love is also off the cards – Helen has been unable to go on a date for 12 years. When Helen is awake, her medication gives her extreme muscle pain and facial twitching. Though most sufferers develop the condition in their teens, Helen believes she was born with it. But – because she wasn’t diagnosed until four years ago – her family and teachers did not understand her constant exhaustion. Her entire childhood was blighted by people assuming she was lazy and stupid.
Though many women in their thirties are married, Helen hasn’t been on a date since 2002, when she was 24. Unfortunately, she has resigned herself to being on her own. She says: “I am constantly in pain and most of the time too exhausted and stiff to move. I can never 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 you 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 fairytale, I won’t be getting a happily ever after.”
Feature writer Amy placed Helen’s story with the Sunday Mirror and has just secured her a magazine deal. If you suffer from a rare condition and would like to raise awareness, please use our online story valuation form on the right hand side of this page, or contact our team via email, firstname.lastname@example.org – or call 0208 549 5406.
To read more stories where we’ve helped our clients raise awareness about an issue or cause, click here: https://www.talktothepress.co.uk/raise-awareness-2