Kleine Levin Syndrome Information Leaflet

Once we received our diagnoses, we realised how little people knew about KLS - and had very little information to go forward with... we wanted something that could help explain to other people what KLS was and how to help our son if he went into an episode.

 

We could not find anything that said all we wanted to see in a leaflet that supported families. We needed a leaflet that could be used to explain to other people what the condition is, how they can help and get involved, as well as where to go for more information, so we collected information from around the internet, and designed a leaflet which we got it approved by one of the leading consultants in Sleep in the UK.

You can download your own copy here - Kleine Levin Syndrome (KLS Leaflet) or you can order some from us with a donation (to cover the cost of professionally printing and postage).Please include your name and address....

Spring 2013 - working with a mum in Belgium - thank you Sylvie - we are delighted to be able to share with you a Flemish version of the leaflet (download only) - Kleine Levin Syndroom

A parents view of KLS

This article was written by a parent living with KLS - it is fantastic article - well worth sharing with friends and family to explain what it is like to live with a child with Kleine Levin Syndrome. You can read the article here: Jonathon Lyons on Quora

This was written by a KLS mum in Belgium. I illustrated it and you can download an A3 copy - so if you want to print it, please remember to scale the pdf to match your print settings. Kleine Levin Syndrome - a parents poem

Short Films explaining KLS

These films available on You Tube explain some of the key elements of having KLS - with the conditions effect teams, it is a great message to share on social media to help explain the condition.

More Videos

• https://youtu.be/T0nuaoADuLc

The Hardest Thing about KLS

The hardest thing about KLS is accepting it and it sucks.... you can download a version here.

A young adult's view of KLS

This was posted on Stacey's facebook wall, she was explainging what KLS was from her view point to family and friends... with her permission I would like to share her insight ...

KLS is also known as "Sleeping Beauty Syndrome". The media likes to refer to us as "Sleeping Beauties".

• To anyone with KLS, this is a bit of an insult. First off, I am in no way a beauty in an episode (physically/mentally/emotionally). Also, I doubt the male KLS patients liked to be referred to as a sleeping beauty.
• Sleeping Beauty is a fairy tale. KLS is a HORRIBLE nightmare. No kiss from a prince will wake you up. I don't think a prince will want to go anywhere near me in an episode. There is no knowing when a KLS patient will wake up. There is no way for a KLS patient to control when they will wake up. The WORST thing for me to be told is I need to start functioning/wake up/get back to normal. If I had ANY control what so ever on that, do you think any KLS patient would be in an episode any longer than we have to?!?!?! Let alone be in an episode? And anyone who would think we want to be stuck in this mind set needs to be bitch slapped.
• The media likes to focus their headlines on (insert name here) slept for (insert days/weeks/months here). Yes, we sleep for days, weeks, months, and even in some cases, years. But we are not comatose that whole time. A KLS patient will sleep for 12-20 per day on average. We will "wake up" to go to the bathroom, eat, etc. But a VERY IMPORTANT thing to know...JUST BECAUSE OUR EYES ARE OPEN, OUR BRAINS ARE STILL NOT FULLY AWAKE. It is those hours of wakefulness that make KLS a living HELL filled with confusion, hallucinations, FEAR, anger, and the inability to think/speak and even take care of ourselves. Any noise or light is awful. It is like putting a flashlight straight to my face and a microphone to my ear and screaming. More than one person talking or having more than one conversation or activity going on is WAY too much stimulation for my brain. Another strange, and very frustrating thing for me (and many KLS sufferers) is when people talk to me the same way they would to me when I am "normal". Most times it is overwhelming/confusing, and I will not comprehend, and most likely have no memory of what you said. 99% of the time I say yes/OK just to shut you up. The simplest tasks such as showering. getting dressed, speaking become very difficult. For someone who can talk your ear off, I have difficulty speaking, or find it tiring to speak at all. A lot of us KLSer's will speak 1-2 word sentences. Some lose the ability to even read/write. I can type, but speaking is just too much for me.
• Anything a KLS patient says or does should NOT be held against them once they wake up from an episode. Our brains are so compromised, that little switch in our heads that tells us to say/do-not to say/do something is turned OFF. Most things we say or do we don't mean. Even more important thing to know is there is a 99% chance we will have no memory of what we said or did. I have gotten in trouble in the past for stuff I have said and done in an episode, and honestly have no memory at all of what I did/said. And any KLS patient can vouch that when we do find out what we said did, we feel awful, guilty, embarrassed, etc. We don't have any control over our actions as we don't over our episodes.
• The time we spend in episode "sleeping" is mostly erased from our memories. Just think of a coma patient being in a coma for days/weeks/etc and waking up that time later. That is what an episode is like. Just because we are "awake" or physically doing something, our memories are ERASED. Most things I remember from an episode is through what other people tell me or what I read on texts/Facebook. If I do "remember" something, I have no idea if it was a dream, really happened, etc. In an episode, I have a hard time telling if I am dreaming, or even alive or dead. Nothing seems real, and when I do wake up, what little I do remember, I have a hard time telling what was real.

As a parent expressing my views of KLS on this web site - it is so hard to see into my son's mind.. but these words really do strike home with me, and I hope that help me understand what my son is feeling, and enable us to help him the best way I can.

Life with KLS

Mat is 4 years older than my son - he has started blogging videos when in episode to try and expain what it is like - you can see his video channel here: Life with KLS

Living with KLS on Rare Disease Awareness day - 29th / 28th Feburary

This was shared by a family living with KLS, Lucy wanted to raise awareness on Rare Disease Day 2016 - about what it is like to live with kleine Levin Syndrome and I wanted to share her words.

" It’s really hard for me not to be bitter on the best of days, but today it is especially difficult. You see, a disease is classified in the USA as “rare” if it “affects fewer than 200,000 Americans at any given time.” KLS affects roughly 1000 people in the whole world. So, when people jokingly state that I’m “one in a million,” it’s actually a bit of an understatement. I don’t say this to try to appear special, or different, or to invalidate anyone with any disease, because I know that even the most common of illnesses is still extremely hard.

I say this because I am bitter. I say it because I am pissed off that, even on a day where the thing that ruined my whole life is supposed to be acknowledged, it won’t be. Because even on rare disease day, my disease is still too rare to be mentioned. Still too rare to be given funding for research. Still too rare to be understood. Still too rare to be anything but a joke to those who couldn’t possibly be expected to see it for the shit show it is.

When I am in an episode, I can’t drive, I can’t really leave my house, I can barely think let alone hold a conversation or be productive. I can’t shower, I can’t make myself food, I can’t make it through an interaction with my mother without crying. I can’t see properly, I don’t feel like myself, I am hungry beyond words, and yet want nothing to eat, my body doesn’t feel like my own. And that’s only in the few hours that I’m awake in a day. For the rest of it, I’m just not there. The isolation is incredible.

It’s hard to remember that I am not the only one who goes through this. It’s hard to remember that there are other people out there who have had their lives flipped on it’s head like I have. It’s hard to believe that people still care about me when I come out of an episode and no one noticed I was gone. I can’t have a job. I can’t really commit to anything. I can’t take a normal amount of classes. I couldn’t even finish high school. It’s like I’m living a life that isn’t mine. When I’m awake, all I can think is this isn’t me and this isn’t how my life is supposed to go. I get asked all the time “are you still having health issues?” from people I haven’t talked to in a while. Or, from people I am close with: “oh, is that acting up again?” It’s like they’re surprised. It’s like they don’t understand that I could live out the entirety of my life without any certainty at all if I’ll ever get better.

When I’m asked how things are going I am expected to smile and say that they’re fine, or great, or school is going well, or we’re making it through, or, when I’m feeling particularly daring, shrug my shoulder and say “you know, haven’t died yet!” I am expected to be okay with the way my future has gone down the drain. And I am l expected to smile and laugh good-naturedly at the words that make me sick to my stomach. “I wish I had that!” “Have you tried yoga?” “Hardships build character!”“I’m sure you’ll be thankful one day.”“You’re so lucky you get to sleep all day.”“I can’t believe you cancelled, you’re so selfish!”

We are supposed to be strong, and we are supposed to face every terrible day with a brave face, and we are supposed to diminish the crappy-ness of our lives and we are supposed to take it when people are ignorant, and we are supposed to be good little fighters who never complain and are thankful for the good days that we do get, and forget about the time we have lost to our disease. But, just for today, I refuse to do that. So yeah, I’m bitter. And I get that today is supposed to be uplifting for us (alone we are rare, together we are strong!), and enlightening for all of you lucky bastards that have never heard of these diseases.

But I am completely bitter, and I’m not sorry about it. Because after today, you can forget about it and go back to your lives. And this is my life."

A teenagers view of KLS

This was written by a 14 year old undiagnosed KLS sufferer. She had posted it on a wall in the early hours one morning during an episode. I illustrated it and you can download a copy - please remember to scale the pdf to match your print settings. Kleine Levin Syndrome - a teenager's poem - it is being used with her permission. This patient has gone onto create her own web site - you can read it here: She posts in and out of episode about living with the condition.

Living with KLS

Marco shared his experience of what it feels like to have KLS during an episode and after an episode. Marco is from France, and English is not his first language - I am sharing these words with his permission in the hope they can help people understand more about the condition.

Is KLS a choice?

The following message was shared on the KLS Foundation 's web site, and ask's why any KLS patient would choose to suffer with KLS, it is often percieved by others that these people choose to sleep, not to attend school, college, work and can control their episodes - there is no way they would choose to live like this:

You can find the KLS Foundation facebook page here or visit their web site.

A siblings view of KLS

This was written by Jake's 13 year old sister - he had been in episode 36 days when she wrote it, and it shows that KLS effects not only the patient but the whole family.You can download a pdf version of the poem here.

An older sister wrote this on facebook about her brother whilst in KLS episode and it just shows how much KLS not only effects the patient but the whole dynamics of family.... an episode effects everyone and the atmophere of home - siblings live through seeing their loved one experience an episode, miss life and then have no memory of that time, the hurtful things their sibling may have said or done to them, the extra attention they get and the demands they present and yet through it all they show amazing maturity, compassion and love.....

"Connor I know you don't use Face book but I know you're having a hard time right now sleeping a ton again but I know we will get through this no matter how hard it is. Always try and stay stand even though you seeing you sleep breaks my heart. I wish this would go away and not come back. I wish you weren't going through this so you could go to school and play sports, hopefully you will grow out of this sooner or later but for nor we have to take one step at a time. I know KLS has ruined some events but when you wake up we always make sure we do it again. I love seeing you when you are awake happy and in a good mood, you're the best little brother anyone could wish for and I don't know what I would do without you. I'll always be by your side and nothing can change that we will always be best friends whether you are asleep or awake - I love you do much buddy and I know this will go away so you can live a normal life like everyone else but for now it's going to be a struggle for a while, don't worry buddy, things will get better sooner or later. I Promises. Just keep staying strong and I'll stay strong for you. I wish this nightmare would end. I hate being sad, knowing you're sleeping but I know when you wake up that you'll end up being okay. I will say when you're in a mood it's sad seeing you like that cause I know you are the most sweetest, funniest and cutest kid and you don;t mean anything you say. I do miss having you around all the time - being loud and laughing but hopefully the old you will come back - I miss you! Sometimes I just don't know what to do with myself, you're amazing kid and everyone knows it and we are all here to help you! We will get through this and that's a promise - family first always - we love you so much <3" - Kayla (September 2013)

KLS Foundation Leaflet

Awareness of Kleine-Levin Syndrome (KLS) is very low. One of the ways you can help change that is by printing out the KLS brochure and sharing it with your community, friends, family, and health care professionals. You can download a copy here: http://klsfoundation.org/wp-content/uploads/2014/11/KLS-Brochure2-2.pdf - this was prduced by the KLS Foundation in America

The KLS Foundation in America also produced this leaflet explaining what KLS is, awareness of Kleine-Levin Syndrome is very low. so if you would like a copy you can download it here. KLS Foundation Leaflet

The second is an older leaflet which I recently found online - I believe it was produced by the KLS Foundation and represents the condition as "Sleeping Beauty" syndrome. It indicates that in 2006, there were only around 500 cases world wide that doctors knew about, it helps indicate that research into the condition is still very new, links with the thalomus and hypothalomus were only discovered in 2006, and it is the first real indication of the duration of the condition of which there is no cure - for boys this is between 6-8 years and for girls 10-12 years on average. You can download the pdf of this leaflet here.

KLS Support UK - Medical Leaflet

KLS Support UK developed a leaflet in December 2012, after seeing ours, to help explain KLS to the medical community and to help doctors diagnose the condition. It explains clearly what KLS is, the symptoms patients may have, it talks briefly about the cause of KLS, how to recognise the condition along with recommendations for current treatment and medication as well as linking to 2 UK medical advisors - one being our consultant!

You can download the 2012 version of this leaflet here:

Síndrome de Kleine-Levin

Información en español sobre esta Enfermedad Poco Frecuente - this is a Spanish speaking web site with information on KLS - http://www.sindromekleinelevin.org

KLS Facebook Profile Pictures

Please show your support for KLS by updating your facebook profile picture to one of these images - you can download a copy by clicking on the image and then saving the file.

I have found it useful to change my profile picture to a KLS image similar to this one every time my son has an episode, and then changing it back to something else when he is a "normal" teenager again. It woks well - it has raised the profile of KLS online, the friends I share with my son now know when he is unwell, and my own friends can offer support when it is needed, and if anyone would like more information about the condition - they can visit the web site and find out more.

New in 2018 - I discovered facebook frames - you can now add a KLS awareness frame to your profile image - just follow the link - Facebook Frame