Elliot's KLS Story (in his own words)

It happened suddenly. At the age of twelve my life was turned upside down by being diagnosed with a rare illness. The definition for my illness is; “a rare neurological condition characterised by excessive need for sleep and food, with altered behaviour”. This illness predominately affects adolescent males, it is called Kleine-Levin syndrome (KLS for short). It was named after the two German doctors who discovered it in the 1940’s.  At first I was not aware that I had an illness. I had developed a nasty chest infection and I was to find out later that the virus had triggered KLS. It was a very upsetting time for me and my family, we had no idea what was wrong with me. I was going senile like an old man losing his mind. I was unable to control my hunger, which was constant and my need for sleep, which seemed to be with me at all times. My mind was very lethargic and I was unable to participate in the most basic conversations. I had no energy or motivation to do anything other than lounge about, I was also totally absent of any emotion. If the house had been burning down I wouldn’t have cared, I was incapable of being able to take any interest in the world around me.

When I have an “episode” of KLS it lasts for an average of 7 days. The illness itself only affects me every four-six months, but when not in an ‘episode’ there are many thoughts and emotions running through my head about KLS. My close family members where shocked, scared and stunned when they learnt that I had been diagnosed with an illness although not life threatening was chronic and could last well into my late teens, when hopefully I will grow out of it.

My parents were determined to find out what was wrong with me even though our Doctor kept reassuring them that this was probably a teenage thing which I would grow out of and not to worry. They insisted I was examined by a specialist, who told them immediately that I had KLS, she had only ever seen one other case in her career.

Before I was diagnosed, I was taken to several hospitals to take part in neurological tests. I was terribly worried as I sat in the bleak waiting rooms of hospitals awaiting to be examined in a MRI scan or have an EEG scan. I felt so lethargic sitting there, motionless. I’d never had an MRI scan before so I was fairly cautious when it came to climbing aboard what seemed like the spaceship enterprise.

Amongst the examinations and the weekly visits to hospitals, I had to fit in my educations and revision as well as all my extra curricular work. My parents and doctor wrote to the school to make them aware them of my condition.  

There are many symptoms of KLS and different people behave differently when they have an episode. When I am in an ‘episode’ my speech is radically different and sounds as if a nine year old child has been hitting the brandy.  I find it very difficult to prolong a conversation, as I cannot concentrate on anything for long periods, this leads me to be dismissive in situations which I find difficult to cope with.  This is very hard for the people around me as I’m normally very engaged and enjoy conversation and being active and socially involved.  With KLS I am lethargic, unresponsive, uncommunicative and devoid of emotion, which some might say sounds like a typical teenager!

When I told some friends about it, most of them where sympathetic and caring but a few where quite apathetic of the whole situation. I think this was because they hadn’t heard of it before and thought I was exaggerating it to gain sympathy.

When in an ‘episode’ I’m aware of everything going on around me. The never-ending chain of doors slamming shut, kettles whistling, television, radio, people getting on with their lives around me. However, none of these distract me from my one ambition; to sleep.  It is such an overwhelming desire that I can sleep for more than 18 hours out of 24, only waking to eat and go to the bathroom.  There are moments of humour when I am in a KLS episode.  I find myself wanting to sing out loud which can be quite amusing for those around me, I also find comfort in watching light hearted comedy shows again and again.

My parents have described my behaviour when in an ‘episode’ as childlike, apparently I show characteristics similar to when I was a young boy. I also become very affectionate to my family members and I have no boundaries when it comes to saying what ever is on my mind, this can be funny but quite disconcerting.

I have learned to live with my condition and I try not to let is affect or change me, but the knowledge that I have this strange, mysterious and rare disorder which can strike without warning is something I have to come to terms with.

There is no cure for KLS, no one really understands why a virus can affect the brain in this way. There is a lot of research being done and may be one day they will find a cure.

If you have a KLS case history, diary, artwork, poem or anything else you would like to share, please let us know.
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