SLEEPING BEAUTY

Hi - have just read your article and feel so relieved that after 2 and half hears of appointments with 7 different consultants - I finally have the possibility of a recognisable diagnosis for my 19 year old daughter who is currently in her 9th episode(each one lasting 3-4 weeks). It has been an exhausting and frightening emotional roller coaster. Does anyone recommend a doctor to diagnose or does anyone know of any other sufferers in the Surrey area? Are there any support groups? Any advice would be appreciated - I feel totally burned out with the stress of the last 2 and half years of worrying about what has been wrong with my daughter.

By Adele .. Posted March 15 2010 at 8:01 PM.

Has anyone though of linking KLS with severe ME. My daughter's symptoms are incredibly like KLS and in some ways she seems to have more in common with people with this condition than many diagnosed with ME. She has had this for 10 years now and we cant believe that we hadn't heard or read about this syndrome. Do people with KLS have the same extreme continual exhaustion on waking too? Does overexerting themselves in even a small way make them worse?

By S and B Baggs.. Posted March 3 2010 at 7:36 PM.

Although I was never diagnosed, I feel certain I suffered from KLS from 1971 to 1981. The episodes began after a concussion; throughout college and law school I had one or two episodes that each lasted 2-5 weeks every semester. I too slept around the clock, except when my friends or family woke me up to eat and use the restroom. Everything seemed extremely confusing, and my senses were very off-kelter; my dreams seemed more real than reality did. I was under the care of an internist, an allergist and a neurologist who did the best they could to diagnose and treat my condition. I've lived the last thirty years fearing that any day I might have another episode, so I was very thankful to learn that once the episodes end they don't return. My children, ages 22 and 24, have shown no symptoms of KLS. I just want to encourage those who are suffering from it now: you can live a productive, fulfilling life, and it will come to an end!!

By Lynn Evans Hokanson.. Posted February 14 2010 at 3:10 AM.

there is any hope to overcome it

By ameer subhan.. Posted February 13 2010 at 7:34 AM.

If anyone can answer some of these questions I would appreciate it.
1. When the sleep state starts does the body feel weak or is it all in the head - a cloudy feeling that seems like one is in a fog, unable to concentrate or focus.
2. Has the person with the problem ever had anyone do muscle energy testing to verify a C1 jamm. ( this is where C1 vertebrae is moving anteriorly causing a compression of the spinal cord)
3. has the person been tested for Chakra balance- the 7 Chakra's are a persons energy stations and can have a great effect on the body if they are not in balance.
4. Has the person with the problem had their meridian's tested? the meridians not only feed vital energies to their related organs, they also reflect any pathological disturbances in those organs, thus providing and acurate tool for diagnosis as well as therapy. If meridians are moving backwards they will cause and incredible sense of tiredness that does not go away, this coupled with a C1 jamm will give a foggy feeling that seems to drive a person to sleep. as a way of recovery.

Take the time to read some research from Don McCann (Structural Energy Therapy SET) and Donna Eden ( Energy Medicine)
you will be enlightened.

By Mel Da Silva.. Posted February 10 2010 at 3:33 PM.

She is adorable, my prayers go to Louisa and others

By larry smith.. Posted February 10 2010 at 11:52 AM.

It's nice to know there are others out there. My fiancé has suffered with KLS since he was 19 he is now 23, we were suppose to get married on Sunday but he fell asleep and we had to cancel everything, that's the way the illness goes. I feel so helpless when he is having an episode, the doctors thought he had countless different conditions such as schizophrenia, epilepsy, psychosis until we saw the programme My Strange Brain and realised he had KLS. He is still in an episode, as I say the lights are on but no one is home, I'm waiting to get him back if that makes sense.

By Rozi.. Posted February 9 2010 at 11:16 PM.

This might sound nuts, but all of you suffering from this disease should talk to a hypnotherapist. I recommend Dolores Cannon. She has hypnotised people to find out why they have various illnesses and cured them. I would try anything at this point. What could it hurt? Good luck to you all! Love & Light!!!

By Traci.. Posted February 9 2010 at 10:08 PM.

I would highly recommend the gonstead protocol to reset the nervous system. We know all symptoms are linked to the nervous system, and a pinched nerve within the spine can cause any symptom, I have worked with many patients, however I have never heard of this syndrom. You might be able to find a gonstead doctor at www.gonstead.com worldwide. My best to Louisa and her family.
Dr. Ben Moshrefi, Southern California

By ben moshrefi.. Posted February 9 2010 at 9:01 PM.

i know how you feel i have something that can never be cured and if i have nomonia I can die within the next day. and my bones are very fragile i can crack a bone and i can hurt any bone aty any time and the disease is HIV. I cry every day

By rayshonna.. Posted February 8 2010 at 2:36 PM.

Hey Louisa, I read your article in the paper and had to write to you.

My name is Melissa im from Sunbury, Surrey, and was quite shocked when i heard another girl in this country was suffering the same illness as me.

I started suffering from KLS in November 2001 when I was 14, I am now 22 and it took the doctors 4 1/2 years for them to diagnose me. I have not had an 'episode' (as i call it) for 2 years now. But in the first couple of years I had apporx 12 episodes for approx 10 days each time.

I used to wake up from it, and i asked if i had been ill because i wouldnt remember anything. Anything that I could remember, I thought i had been dreaming, but is what is called derealization, when everything feels unreal around you and thats whats the hardest thing about it.

If you want to reply feel free, as I know exactly how it feels to suffer something no one else can really understand.

Melissa x

By Melissa Custodio.. Posted February 1 2010 at 8:50 PM.

Hello my name is doug. My son James was diagnosed with K.L.S back in 2007 after having his first episode in November 2006. My wife Julie and i had no idea what was happening with James untill he was diagnosed at Southampton Hospital by Professor Kennedy. I have spent many hours on the internet looking for infomation on K.L.S but there is no local suppoort. I am writting this in the hope that we might be able to get together as we only live 20 minutes away from you in Billingshurst. Hope all is well with Louisa at this time as we know how random these episodes are as James has been in one for the last 15 days and today he is back with us again, i know you will understand what i mean by that.

By Doug Foster-Hopkins.. Posted January 31 2010 at 8:08 PM.

I have suffered from KLS for about 8 years. I am an adult male with children and have been able to maintain a successful career. So there is hope - but it is not easy. There is a DR. Mignot at Standfor University in California USA that does extensive research on this disease. Perhaps Louisa and her parents would want to see him.

By Brian Strain.. Posted January 31 2010 at 5:07 PM.

Hi my names sandra,i also have a son aged 17 with K.L.S i was amazed when i read your story in the news of the world,as there is such little help for the people that suffer from this rare illness.
My son Kyle has been suffreing from K.L.S for sevel years now,he also looses speacial times in his life such as ,birthdays,christmas,holidays etc....i feel there is no suport for K.L.S suffers,i have been fighting for help for my son for 5 years now,if you read what i have wrote under your story i would be greatfull to here from you,as im sure any suport for louisa you would also be greatfull for this is my email address look forward to hearing from you Sandra. sandraarnold6@yahoo.com

By sandra arnold.. Posted January 31 2010 at 3:59 PM.