Teen can sleep for up to 12 DAYS because of rare 'Sleeping Beauty' syndrome

This Is Lancashire: Teen can sleep for up to 12 DAYS because of rare 'Sleeping Beauty' syndrome Teen can sleep for up to 12 DAYS because of rare 'Sleeping Beauty' syndrome

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.

Comments (9)

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9:46am Wed 18 Jul 12

oftbewildered says...

doesn't sound too hopeful for being a nurse - she will need to be alert, awake and remember things in order not to endanger life. If she is sleeping for such long periods, sounds like she is waking up hypoglycaemic, which accounts for her aggression. Does she not have glucose injections when she is sleeping to help with this? I am no expert, and it was just a thought - so no comments please to tell me what a daft idea this is. Please be constructive. . What a burden for her to carry.
doesn't sound too hopeful for being a nurse - she will need to be alert, awake and remember things in order not to endanger life. If she is sleeping for such long periods, sounds like she is waking up hypoglycaemic, which accounts for her aggression. Does she not have glucose injections when she is sleeping to help with this? I am no expert, and it was just a thought - so no comments please to tell me what a daft idea this is. Please be constructive. . What a burden for her to carry. oftbewildered
  • Score: 6

11:52am Wed 18 Jul 12

MsMooseGirl says...

I am inclined to agree about the nurse ambition, but I do hope you can achieve your dreams. Training to be a nurse is intense, in terms of uni study and clinical placements, however you do have an illness which would be covered under the disability discrimination act and the likes of the University of Salford have an excellent disability team to support students who need it. Perhaps there is a way around – such as extending the training beyond the three years. It might be worth contacting the NMC to get some advice from them?
I am inclined to agree about the nurse ambition, but I do hope you can achieve your dreams. Training to be a nurse is intense, in terms of uni study and clinical placements, however you do have an illness which would be covered under the disability discrimination act and the likes of the University of Salford have an excellent disability team to support students who need it. Perhaps there is a way around – such as extending the training beyond the three years. It might be worth contacting the NMC to get some advice from them? MsMooseGirl
  • Score: 5

7:54pm Wed 18 Jul 12

bolton angel says...

I don't think this lass is going to hack it as a nurse. No good having big blanks in her memory. God help her patients, they might end up as blanks as well. Did I give that woman the medication????
I don't think this lass is going to hack it as a nurse. No good having big blanks in her memory. God help her patients, they might end up as blanks as well. Did I give that woman the medication???? bolton angel
  • Score: -2

9:59pm Wed 18 Jul 12

MandyG says...

Well done Shannon for helping to raise awareness of KLS. My daughter also has this illness so I totally understand how much it affects your life and those around you. Stay positive and follow your dreams - you CAN achieve them and become a nurse. For all of those that have commented otherwise I ask that you look up the illness and understand it before putting negative comments. Obviously Shannon would not be working during an episode as it totally wipes you out and in between episodes (when Shannon would be at work) sufferers are perfectly 'normal' so there would be no risk to patients. And Shannon remember that your episodes will not always be as frequent as they are now. Thank you to MsMoosegirl for some helpful suggestions on how to achieve her dreams. It may take a little longer than someone else but you CAN do it.
Well done Shannon for helping to raise awareness of KLS. My daughter also has this illness so I totally understand how much it affects your life and those around you. Stay positive and follow your dreams - you CAN achieve them and become a nurse. For all of those that have commented otherwise I ask that you look up the illness and understand it before putting negative comments. Obviously Shannon would not be working during an episode as it totally wipes you out and in between episodes (when Shannon would be at work) sufferers are perfectly 'normal' so there would be no risk to patients. And Shannon remember that your episodes will not always be as frequent as they are now. Thank you to MsMoosegirl for some helpful suggestions on how to achieve her dreams. It may take a little longer than someone else but you CAN do it. MandyG
  • Score: 2

3:50am Thu 19 Jul 12

alecfranco says...

I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll.
I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll. alecfranco
  • Score: -1

3:51am Thu 19 Jul 12

alecfranco says...

I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll.
I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll. alecfranco
  • Score: 0

3:51am Thu 19 Jul 12

alecfranco says...

I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll.
I personally feel very sorry for this poor girl "NOT IN A PATRONISING WAY EITHER" I genuinely feel for her. As for Help via The "DISABLED DISCRIMINATION ACT" I dont think that will help her 1 iota, Its about as useful as a peice of used toilet roll. alecfranco
  • Score: 0

10:22am Thu 19 Jul 12

oftbewildered says...

MandyG wrote:
Well done Shannon for helping to raise awareness of KLS. My daughter also has this illness so I totally understand how much it affects your life and those around you. Stay positive and follow your dreams - you CAN achieve them and become a nurse. For all of those that have commented otherwise I ask that you look up the illness and understand it before putting negative comments. Obviously Shannon would not be working during an episode as it totally wipes you out and in between episodes (when Shannon would be at work) sufferers are perfectly 'normal' so there would be no risk to patients. And Shannon remember that your episodes will not always be as frequent as they are now. Thank you to MsMoosegirl for some helpful suggestions on how to achieve her dreams. It may take a little longer than someone else but you CAN do it.
I think people are being more realistic than anything else. No one is suggesting that Shannon is not normal. Shannon might well achieve her degree at University to allow her to be registered as a nurse (and good luck to her) but nursing might not be the way forward I am sure she can raise awareness etc. in other ways which would incorporate employment for her. Has she asked the opinion of her KLS team re this.
[quote][p][bold]MandyG[/bold] wrote: Well done Shannon for helping to raise awareness of KLS. My daughter also has this illness so I totally understand how much it affects your life and those around you. Stay positive and follow your dreams - you CAN achieve them and become a nurse. For all of those that have commented otherwise I ask that you look up the illness and understand it before putting negative comments. Obviously Shannon would not be working during an episode as it totally wipes you out and in between episodes (when Shannon would be at work) sufferers are perfectly 'normal' so there would be no risk to patients. And Shannon remember that your episodes will not always be as frequent as they are now. Thank you to MsMoosegirl for some helpful suggestions on how to achieve her dreams. It may take a little longer than someone else but you CAN do it.[/p][/quote]I think people are being more realistic than anything else. No one is suggesting that Shannon is not normal. Shannon might well achieve her degree at University to allow her to be registered as a nurse (and good luck to her) but nursing might not be the way forward I am sure she can raise awareness etc. in other ways which would incorporate employment for her. Has she asked the opinion of her KLS team re this. oftbewildered
  • Score: 0

12:48am Fri 20 Jul 12

DancingRT says...

I, as a patient with KLS, have gone on to college, and gone into the medical field. When in episodes I can't work, but not in episodes, I do well at work without many issues and have NEVER caused any harm to any patients. I love my job, and am grateful to be able to work. There are KLS patients who have gone to college and become teachers, nurses, and even an airline pilot!!! While not in episodes we are perfectly normal and can do anything!!!
I, as a patient with KLS, have gone on to college, and gone into the medical field. When in episodes I can't work, but not in episodes, I do well at work without many issues and have NEVER caused any harm to any patients. I love my job, and am grateful to be able to work. There are KLS patients who have gone to college and become teachers, nurses, and even an airline pilot!!! While not in episodes we are perfectly normal and can do anything!!! DancingRT
  • Score: 0

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