Teen can sleep for up to 12 DAYS because of rare 'Sleeping Beauty' syndrome (From This Is Lancashire)
Teen can sleep for up to 12 DAYS because of rare 'Sleeping Beauty' syndrome
9:23am Wednesday 18th July 2012 in News
MOST parents would say their teenager sleeps too much and eats too many sweets — but one Bolton teen can sometimes take 12 days to wake up and can gorge herself on sweets and chocolate without knowing she is doing it.
For five years, Shannon Magee, from Smithills , has suffered from Kleine-Levin Syndrome (KLS) — a rare condition otherwise known as Sleeping Beauty Syndrome.
The 17-year-old, who has two brothers and three sisters, has slept through birthdays, Christmases, family holidays — including a skiing trip — and her GCSE exams, and there is nothing she can do about it.
There are only 45 people in the UK who have the condition, which is a complex neurological disorder characterised by periods of excessive amounts of sleep and altered behaviour.
Shannon, a Bolton College student, said the condition has changed her life.
She said: “It is like being awake in a coma. It takes part of your life away with it. It’s like I’m in my own little world and I don’t recognise people.
“When I’m awake it’s like I’m sleepwalking.”
Shannon has episodes each month, which usually last about 12 days, during which time she can sleep for about 22 hours per day.
When she is awake, her behaviour changes as she can become aggressive and demands sweets and chocolate, and needs around-the-clock care from her parents.
It also affects her memory, and she says huge chunks of her teenage years are blank.
Shannon, a former Smithills School pupil, said: “I struggled through secondary school, and the teachers didn’t believe what was happening to me.
“I didn’t really like to tell anyone at school, so I drifted away from a lot of people and I failed some of my GCSEs because I was in a sleepy episode.”
After years of tests and examinations, Shannon was finally diagnosed with KLS after her dad, Christopher Dodd, researched her symptoms online.
Her mum, Julie Ratcliffe, aged 56, said: “They were taking blood tests because they thought she was drunk or on drugs, then they thought it was epilepsy.
“Even when we go to appointments and it is on her medical records, the doctors don’t know what it is.
“When she is in an episode it can be very stressful and she can be very challenging.
“She has a vague expression on her face and I can get about 50 texts at work asking for things because she has forgotten she has already texted.
She added: “We feel better knowing it is not life-threatening, but there is not enough information, nobody knows the answers.”
The teenager now wants to become a nurse so she can help others but is worried her condition will get in the way of her dream.
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