Meet the Real Life Sleepy Beauty - Lily Clarke

 Every Monday morning most of us would admit to wanting to spend an extra day or two in bed. Meet the British girl who spends up to 2 months at a time asleep

Lily Clarke, 21, has an affliction that at first glance many of us would envy: the ability to spend up to two months in a row in bed. Lily is one lady that is not trying to get out of school work, however. She suffers from a rare condition called ‘Klein-Levin’ syndrome. It all began in 2007 for Lily, who after a day of ice-skating, complained that her head felt rather strange. Thinking she had a cold, she took herself off to bed and stayed there. Her condition is, in fact, so debilitating that all she can do in her long periods of sleep when they take her, is wake up for a short hour in which to feed herself and take a quick drink of water.

Cancel Christmas, Birthdays and Exams

Lily has missed her 18th birthday, Christmas and New Year, due to her illness and many more important chunks of her life are going by without note. Having seen several different doctors who diagnosed everything from ME to depression, Lily underwent a series of tests before her mother finally read up upon the rare condition and brought it before her doctors.

No Known Cure

There is no cure for Klein-Levin syndrome (also known as ‘Sleeping Beauty Syndrome’) which is a neurological disorder affecting patients with excessive drowsiness and altered behaviour. When the patient awakes during their bout of sleep, they often appear child-like and dopey in their manner and are unable to concentrate. They are often affected with disorientation, confusion, lethargy and a complete lack of emotions. Most patients become completely bed ridden for long periods of time when an attack strikes. Most cases of Klein-Levin syndrome are seen in teenage boys. Those with Klein-Levin syndrome can go for weeks, months or even years between attacks before they reappear with little warning.

What is the treatment for Klein-Levin Syndrome?

It has been speculated that Klein-Levin syndrome could be hereditary, due to a lack of dopamine or perhaps the result of an autoimmune disorder but there is no conclusive evidence to support any of those theories. There are no known genetic markers for KLS as yet.

Treatment for KLS is very limited. While stimulants can be taken by the patient, they don’t improve the sluggish or altered mental state of the patient.

Is there hope for Lily?

The only good news is that more than 90% of patients will outgrow this condition and we can only hope that in the future, Lily is one of them.