Student who suffers from Kleine-Levin Syndrome fears she will miss Christmas

Gemma Garfirth, 21, (pictured) has a rare sleep disorder which causes her to fall asleep for weeks at a time

A student is scared she will end up sleeping through Christmas this year as a result of a rare disorder.

Gemma Garfirth, 21, slept through a week of festivities three years ago – missing family gatherings, present-opening, and even Christmas dinner. 

The student, from Wellingborough, Northamptonshire, suffers from the incurable Kleine-Levin Syndrome (KLS), dubbed the Sleeping Beauty syndrome.

It often sees her fall into a trance – known as a ‘sleep episode’ – and nod off for an entire week and has played havoc on her life over the past five years. 

Around 1,000 people worldwide are affected and it is known to cause extreme exhaustion, paranoia and hysterical behaviour.

Miss Garfirth, who lives in Birmingham for her studies, said: ‘As everyone gets excited and looks forward to the Christmas period, I struggle to.

‘An episode can come on at any time and I have absolutely no control over it.

‘Having already missed one Christmas, it does stress me out. I tend to not look forward to it as much as I used to.

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‘KLS has such a huge impact on my life, and trying to live as a normal young woman has its difficulties.’

In February 2011, aged 15, Miss Garfirth nodded off while on a shopping trip with her mother, Mandy, 45, a receptionist.

By the evening she was acting strangely, repeating herself and drifting in and out of a dream-like state.

The student was diagnosed with Kleine-Levin Syndrome in 2011 and has suffered from 30 sleep episodes over the past five years 

Miss Garfirth, who studies mental health nursing at Birmingham City University, was rushed to hospital.

Doctors carried out blood and urine tests in an attempt to determine what was wrong with her.  

They also checked my heart rhythm, brain activity and gave her a lumbar puncture – where a needle is inserted into the lower part of the spine to test for conditions affecting the brain, spinal cord or other parts of the nervous system.

Shortly after arriving at hospital, Miss Garfirth fell into a deep sleep which lasted for fourteen days.

Over the next five months she experienced two more prolonged sleep episodes, and by August 2011 she was finally diagnosed with Kleine-Levin Syndrome after undergoing further tests.

Leading a normal life soon became difficult for her, and she missed weeks of school due to frequent sleep episodes.

Miss Garfirth (pictured with her boyfriend, Greg Lloyd, 24) fell asleep and missed the full week of Christmas festivities three years ago

‘Once I missed a biology exam because I was in the middle of an episode,’ she said.

‘Luckily my school allowed me to resit it, but I was so angry and upset over how much it was affecting my life.’

Then in December 2013, she felt herself drifting into another deep sleep as she sat wrapping Christmas presents in her bedroom.

She explained: ‘I felt a strange sensation in my head and was struggling to concentrate.

‘I knew I was about to go into an episode. It was just three days before Christmas, I was devastated.

‘It had always been my favourite time of the year and I was just so upset to miss it.’

During the week-long episode, Miss Garfirth was woken by her mother twice a day to eat and use the toilet.

Having suffered from four episodes just this year, Miss Garfirth fears she will miss this year’s Christmas festivities

‘I missed the whole buzz surrounding the lead up to Christmas,’ she said.

‘I was basically asleep throughout the entire celebrations – I was gutted.’

Thankfully she woke up from the episode on December 29 – just in time to celebrate News Year’s Eve.

WHAT IS KLEINE-LEVIN SYNDROME?

Kleine-Levin Syndrome is a neurological condition that starts during adolescence, and sometimes begins after an infection or illness.

It is characterised by periods of excessive sleep of up to 20 hours a day. Episodes can come on very quickly and last between a few days to a few weeks.

During such an episode a sufferer may be irritable, childish, disorientated and want to eat excessive amounts of food.

Patients return to normal between episodes, however they may become depressed as a consequence of the condition.

Around 1,000 people worldwide suffer from the disorder, which is commonly known as Sleeping Beauty Syndrome. Two-thirds of sufferers are male.

There is no known cure for the sleeping disorder, and the main treatment is watchful waiting at home by loved ones.

Research suggests episodes decrease in frequency and intensity over the course of 8 to 12 weeks. 

Now, having suffered from four episodes this year, the most recent in October, Miss Garfirth is worried she’ll miss this year’s Christmas festivities.

Tiredness and drinking certain types of alcohol can trigger an episode, so she ensures she has eight hours sleep each night and avoids drinking.

She said: ‘If it does happen I know I’ll be really unlucky, so I’m just keeping my fingers crossed.

‘It’s such a special time of the year and to miss it twice will be horrendous.

‘KLS is a tough thing to live with, and I’ve been labelled everything from lazy to drunk from people who don’t understand it.’

With the support of her family and boyfriend, Greg Lloyd, 24, a shop assistant, she is determined to have the best Christmas.

Doctor Zenobia Zaiwalla, a consultant neurophysiologist at John Radcliffe Hospital in Oxford, said: ‘Gemma has Kleine-Levin Syndrome, a rare sleep disorder associated with episodes of excessive daytime sleepiness with disinhibited behaviours.

‘Her episodes last for about a week and have occurred in the midst of exams. 

‘Stress and sleep deprivation can trigger episodes as well as alcohol and in women can be linked to menstrual cycle.

‘There is no proved treatment, though stimulants and mood stabilisers were tried, but not effective for Gemma.’