ABC Primetime tonight has a show about sleep disorders. I don't think it;s anything to do with RLS, but something called KLS......these people sleep 20 hours a day for month and years and often loose their memory, etc.
It's the opposite of us, but it's intereresting none the less. Maybe just to understand how these parents started a foundation and how hard it was to find help.
Lynne gotta run
abc primetime tonight
Lynne, did some searching and here is what I found...
Kleine-Levin Syndrome (KLS) is a rare complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike. When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported.
Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake. Not everyone affected by KLS exhibits all of the symptoms described above.
Affected individuals may go for a period of weeks, months or even years without experiencing any symptoms, and then they reappear with little warning. In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However they function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the adolescent’s life and family. KLS robs children and young adults of big pieces of their lives, one agonizing episode at a time.
The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families. The cause of Kleine-Levin Syndrome is not known.
A new KLS research study is being conducted to investigate a possible viral involvement in KLS.
http://www.kleinelevin.com/site/kls/
Hazey
Kleine-Levin Syndrome (KLS) is a rare complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike. When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported.
Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake. Not everyone affected by KLS exhibits all of the symptoms described above.
Affected individuals may go for a period of weeks, months or even years without experiencing any symptoms, and then they reappear with little warning. In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However they function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the adolescent’s life and family. KLS robs children and young adults of big pieces of their lives, one agonizing episode at a time.
The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families. The cause of Kleine-Levin Syndrome is not known.
A new KLS research study is being conducted to investigate a possible viral involvement in KLS.
http://www.kleinelevin.com/site/kls/
Hazey
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
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ViewsAskew
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Holy ^%#$@%!
I'm with you, Fidget! I am one lucky lady. That sounds just awful, truly awful.
I'm with you, Fidget! I am one lucky lady. That sounds just awful, truly awful.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
non rls
Anyone reading this, please say a prayer today for my brother-in-law. He has prostrate cancer and is having surgery today, in fact, he is in surgery as I am writing this. Thanks
Charlene
Taking one day at a time
Taking one day at a time
non rls
Thank you so much. I am so blessed with so many wonderful friends in this group. Thank you again.
Charlene
Taking one day at a time
Taking one day at a time
non rls
Just wanted to thank everyone for all of your prayers for my brother-in-law who had prostrate cancer surgery today. My sister called and he came through it beautifully. The dr said the frozen part was not cancerous and took a biopsy of one of the lymph nodes and felt it was fine too. She will get the results by Wednedsay. Thank you again. You guys are really awesome and so glad that I found you.
Lynn thank you for your note. I cried when I read it.
Lynn thank you for your note. I cried when I read it.
Charlene
Taking one day at a time
Taking one day at a time
thank you everyone
I just talked to my sister this morning. My brother-in-law went in for prostrate cancer on the 27th of July and surgery went well. The dr took a biopsy of the lymph node to make sure it was not cancerous. They went in to the dr today to have the stitches removed (26) and the lymph node was negative and he is completely cancer free. He had the whole prostrate removed and the cancer did not spread beyond the prostrate. Thank you again for all of your prayers. They are so happy and thankful.
Thank you again.
Thank you again.
Charlene
Taking one day at a time
Taking one day at a time
abc primetime
Lynn
Thank you very much. You are truly a great person. You are my angel with wings and have helped me through some rough times.
Thank you very much. You are truly a great person. You are my angel with wings and have helped me through some rough times.
Charlene
Taking one day at a time
Taking one day at a time
CT I am so happy for you and your family.
*************Positive Thoughts****************
Hazel
*************Positive Thoughts****************
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
abc prime time tonight
Dear Hazel
Thank you so much I really appreciate that. You people are so awesome. Love ya all
Thank you so much I really appreciate that. You people are so awesome. Love ya all
Charlene
Taking one day at a time
Taking one day at a time