My name is Sean and I was diagnosed with KLS about 7 months ago. I just turned 40 years old last December. I have been suffering from this condition since I was 15 to 16 years old. I was married for 16 years and have 3 beautiful kids. Through all of this my marriage has failed and I live somewhat of a unstable life. Being 40 years old and having KLS is extremely difficult. Just trying to hold down a job but also trying to help people that are in your daily life understand what you are going through. I have had a long haul of experiences with people accusing me of being everything from an alcoholic, drug addict or just lazy. If it was at all possible I would like to some day share my experiences on a nation-wide if not world-wide network like the media to possibly help others suffering from KLS. I have been on many different medications from many different doctors who couldn’t figure out my condition and I was continuously misdiagnosed. Most recently I’m taking Ritalin and I’m not sure if it is working.

I just woke up from a 2 week episode today. It is terrifying not knowing if your job is still there, the extra added pressure that I put on fellow employees who have to cover for me.

I really need help and I hope by writing this information about myself that someone might read this and have some answers to help me find a cure or at least some type of medication that will slow down or totally eliminate these episodes.

My husband is 43 and was just diagnosed a few weeks ago. I can really relate to what you posted. The disorder did make things very difficult on our marriage. It’s hard to know what to think when doctors say there is nothing wrong. My husband is also the sole breadwinner, so I can very much relate to the job issue. His employers are very understanding, but seeing as how this disorder is so unpredictable, it’s difficult to know how long that will last.

Please know there are others out there that understand. I know my husband is getting very depressed by this. I hope you have a support system, someone to lean on. Sending warm wishes your way.

Sheila

Hi Sean,

I am happy to learn that you are out of your last episode.  But I’m very sorry about the anxiety you feel about the possibility of losing your job because of Your KLS episodes.  Be sure to have your doctor document that you suffer from KLS.  You are protected by law and an employer can’t just dismiss you because of illness.  Look at the American disability act.  When you are in an episode, KLS is a disability .  We all are working to educate the world about KLS, to make your life easier and to lead to a cure!

Hi there,  my husband is 45 yrs old has has been dealing with a sleep disorder that we believe to be KLS.  We are still looking for a definite diagnosis but have seen an Internist specializing in sleep disorders and a Phyciatrist and both think that KLS is probable but neither has seen a case of it in there practice.  We will be seeing a neurologist at UBC Hospital to see if we can finally get a diagnosis.  This disorder has been very trying on our marriage as the episodes are almost weekly, lasting 2-3 days where he will sleep for 23 hours a day.  It is unpredictable and makes planning anything almost impossible.  Know that you are not alone.  I hope that you have someone that you can lean that will support you through this.  Kelly

Hi Sean,
I can hear and feel the anxiety that you face as an adult with KLS.  It is an awful condition at any age, but clearly you are afraid of losing your job while in an episode.  I hope that this never happens.  It is unusual for folks your age to have KLS but there are a few adults who report having KLS.  As you know research is slow, and we do not yet know of a medication that really helps.  We are all eager to hear the reports and research progress that the experts will share in Aug at the KLS conference.
I hope you stay well.
Varda e Farber

I had KLS up to the age of 40. I had my first episode at 15 and averaged one every 4 to 6 months up until I was 40. They typically lasted 10 days to 3 or 4 weeks. That includes going into it, being deep in it and coming out of it. I was lucky that my wife was supportive. I could occassionally hear the frustration in her voice when I could not get up to do something we had planned but she knew what I was like when I was healthy so she would get through it with me. I pray you are doing well these days. I would encourage you to let everyone around you know about KLS, I did not, mainly because I did not know what was wrong nor did the doctors who said I had siezures, was depressed, had silent migraines etc…I knew inside none of it was true. Think goodness for the documentary I saw. I knew right away they were talking about me! If you educate everyone around you I think you may find they will be intrigued and even supportive. if it ever stikes me again I will tell everyone I know what is wrong so that I do not have to stress out like I did for 25 years.

I agree with “Whole Again” that since there still is no known cure for KLS, it is best to tell everyone you know if you are suffering from KLS.  Describe what you are going through.  Educate those in your life about KLS.  You will be surprised at how supportive some people will be.  And support is what you need.  No one should have to battle and deal with KLS alone.