KLS is stealing my life

Kleine-Levin Syndrome(KLS) is a rare and complex neurological sleep disorder,it affects one in a million people.(KLS is also known as Sleeping Beauty Syndrome)

Some of the symptoms are,

(1) Hypersomnia or excessive sleep: Patients spend between 12 and 24 hours per day asleep and are difficult to arouse from sleep.When an episode occurs it can last for a few days or up to several months. Once an episode ends, patients generally have no recollection of their experience. The symptoms can reappear with little or no warning.

(2) Cognitive impairment: Patients experience confusion, diminished comprehension, poor concentration, memory problems and difficulty in communicating. Speech impairments are also common such as; monosyllabic, slurred and childish speech.

(3) Altered perceptions: most patients report feeling ‘disconnected’ with the real world in some way during an episode, as if their surroundings seemed wrong, distorted, as in a dream. In addition some patients experience auditory and visual hallucinations.

(4) Compulsive eating (hyperphagia): three quarters of KLS patients experience eating disorders during episodes. They have powerful cravings for foods they normally would not eat such as sweets or junk foods.

Other symptoms: these include migraine headaches; hypersensitivity to light and noise; anxiety; irritability. Many KLS patients also show symptoms like abnormal body temperature, changes in heart rate and blood pressure and flu-like symptoms,amongst many other symptoms.

KLS also affects anything that is to do with your internal body clock.

At this stage there is no cure.

The medication i have been prescribed to stay awake is called Modafinil. Modafinil is not funded.Funding has been applied for several times but it has been declined.The cost of this medication is $440.00 per month.As i can not work because of KLS its a large amount of money to come up with.

Without this medication i cannot live a normal life as i will be asleep or sick all of the time.

KLS steals your time and your life.

It's no fairytale...