I just read about this courageous 22 year old woman Alanna Wong who is suffering from Kleine-Levin Syndrome (KLS). It’s a rare sleep disorder that makes her fall into a trance without warning. She sleeps for 22 hours at a time and throws terrifying tantrums. She behaves like a baby & she’s unable to read or communicate. Basically she becomes unpredictable every time she goes into trance. Once it even lasted for 8 months & she doesn’t remember anything later on.
The doctors took many years to diagnose this problem. At first, they thought she had schizophrenia & those medications worsen her condition. . Since KLS is so rare, it mainly affects men in their 20s. Naturally doctors failed to recognize the syndrome in Alanna. She was just 10 year old when she got KLS & she suffered even more for 8 long years owing to the fact that she was misdiagnosed.
Her mother Diane read about KLS online, & then a specialist confirmed that Alana was suffering from this rare disorder. Her brain scans revealed the thallomys (the area responsible for normal sleep and wake functions) was lacking in activity when she was going through one of her episodes.
'To know what was causing everything was a huge relief. I was finally able to say to people what was wrong with me and explain that I wasn't just weird. It changed my life, and now I'm trying to rebuild. Teens and high school years are hard enough, but KLS makes it a million times worse’ said Alana.
She added: 'It's just too difficult. 'I can't do jobs where an episode can trigger and stop me from doing what's needed at work. At college, nobody would understand if I went into an episode during a class. And I might miss weeks of coursework because I had an attack. I'll be focusing on a career I can manage from home with flexible hours.'
Now she wants to help others who are affected by KLS. She runs the charity klslife.com to raise awareness & offer support to families. She’s also writing a book of her experience, which will come out later this year.
The problem is that doctors haven’t yet defined as to what causes KLS. Dr Christian Jensen, said: 'KLS is a rare condition and, therefore, is relatively unknown. It can be devastating for people who suffer with it and, sadly, there's no definitive treatment.'
Since Alana has suffered for so long, she knows this disease & I like her attitude. She wants to help others – that’s something even rare. Lots of people have health problems; they only complain but never bother to lend a hand to anyone in need. Moral support counts a lot in a world where no one has time to understand the sufferings of others. You have to have a very open mind to comprehend such illnesses. Alana too had been judged. People thought she was an attention seeker or something. She was bullied in her school. Doctors suspected that she was taking drugs. It’s very difficult when people are assuming all the time that you are an attention seeker whereas in reality you’re suffering from a disease.
Alana also said: 'If I can help just one person get diagnosed and find support, I know I will have contributed to society in a very positive way. Looking back on the 20 years that I’ve lived, even though KLS had devastated many parts of my life, I am grateful for the life lessons it has taught me.'
Check out her website:
KLS Life – a place to remember every dark cloud has a silver lining
The doctors took many years to diagnose this problem. At first, they thought she had schizophrenia & those medications worsen her condition. . Since KLS is so rare, it mainly affects men in their 20s. Naturally doctors failed to recognize the syndrome in Alanna. She was just 10 year old when she got KLS & she suffered even more for 8 long years owing to the fact that she was misdiagnosed.
Her mother Diane read about KLS online, & then a specialist confirmed that Alana was suffering from this rare disorder. Her brain scans revealed the thallomys (the area responsible for normal sleep and wake functions) was lacking in activity when she was going through one of her episodes.
'To know what was causing everything was a huge relief. I was finally able to say to people what was wrong with me and explain that I wasn't just weird. It changed my life, and now I'm trying to rebuild. Teens and high school years are hard enough, but KLS makes it a million times worse’ said Alana.
She added: 'It's just too difficult. 'I can't do jobs where an episode can trigger and stop me from doing what's needed at work. At college, nobody would understand if I went into an episode during a class. And I might miss weeks of coursework because I had an attack. I'll be focusing on a career I can manage from home with flexible hours.'
Now she wants to help others who are affected by KLS. She runs the charity klslife.com to raise awareness & offer support to families. She’s also writing a book of her experience, which will come out later this year.
The problem is that doctors haven’t yet defined as to what causes KLS. Dr Christian Jensen, said: 'KLS is a rare condition and, therefore, is relatively unknown. It can be devastating for people who suffer with it and, sadly, there's no definitive treatment.'
Since Alana has suffered for so long, she knows this disease & I like her attitude. She wants to help others – that’s something even rare. Lots of people have health problems; they only complain but never bother to lend a hand to anyone in need. Moral support counts a lot in a world where no one has time to understand the sufferings of others. You have to have a very open mind to comprehend such illnesses. Alana too had been judged. People thought she was an attention seeker or something. She was bullied in her school. Doctors suspected that she was taking drugs. It’s very difficult when people are assuming all the time that you are an attention seeker whereas in reality you’re suffering from a disease.
Alana also said: 'If I can help just one person get diagnosed and find support, I know I will have contributed to society in a very positive way. Looking back on the 20 years that I’ve lived, even though KLS had devastated many parts of my life, I am grateful for the life lessons it has taught me.'
Check out her website:
KLS Life – a place to remember every dark cloud has a silver lining
