Jody Robson, 24, from Birmingham, England, UK, believes she is suffering from a rare neurological disorder called Kleine Levin Syndrome (LKS) or Sleeping Beauty Syndrome. It is characterized by persistent but episodic desire to sleep that can last more than a week.
KLS is very rare, occurring at a rate of one in a million, there is no known cure, and there is little evidence supporting drug treatment. Jody’s episodes are so severe, she was sleeping at the time of delivering her first baby Harley.
The mother-of-two said:
“One moment I’ve closed my eyes and the next I’ve woken up and it’s two or three weeks later. I’ve missed holidays and my sister’s 18th birthday because I was in an episode. It upsets me because I don’t remember giving birth and it’s supposed to be a precious moment. I think that’s the most upsetting episode I ever had. It gets me emotional because I missed it.I honestly feel that I am sleeping through my children’s lives I have missed out on so much. The first year with your first child is really special and I missed out on it. The sleeping part is not so scary – it’s the recovery afterwards. You are scared that you are not going to be out and back to normal again and the days just drag away. I just want a diagnosis so I can get some help.”
Now, Jody relies on her husband, Steven, 29, and mother, who look after their children and care for her, while she is asleep. They wake her up at least twice a day so she can take a quick bite, drink water and go to the toilet, while being in a trance-like state. Then she immediately falls back to sleep again.
A typical episode for Jody consists of a least a week’s sleep and then two weeks of recovery. Despite the debilitating effect on her life doctors have yet to diagnose her. Over the years she has been tested for epilepsy and narcolepsy – with negative results.
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