JODY: I honestly feel that I am sleeping through the majority of this life.
I’ve missed out on so much.
COMM: Jody Robson can fall asleep for days at a time.
And as a result, has missed some of the biggest events of her life.
JODY: The longest I have been asleep is, I think, about 11 days.
My oldest son, I don’t remember his birth at all.
I think I went into an episode the day before I went into labour, and I came out of it about
two and a half weeks later completely.
COMM: While her family is supportive, her condition puts strain on her relationships.
STEVEN: It’s a great struggle when Jody is having one of her episodes and she is asleep.
Because I’m on the call 24X7 with a job I do, I have to phone around obviously, try
and get some help with the boys.
COMM: And while not yet officially diagnosed, she could be suffering from a recognised condition.
PROF WALKER: KLS is a very rare condition.
Having episodes lasting up to 11 days where you sleep continuously, then having weeks
between another episode is quite typical.
COMM: The 24 year old had her first experience of the condition when she was 12.
JODY: I was living in Spain at the time, and I went to a friend’s sleepover.
I felt really weird and tired and I just went to sleep and I didn’t wake up for about
8 days.
When I was just coming out of an episode, nothing seemed real.
Everything was dreamy.
I couldn’t remember anybody, couldn’t remember who I was.
KIM: We was really shocked.
I was worried when Jody first fell asleep.
We just wanted somebody to tell us what was wrong with her.
COMM: Since then, Jody has had over 50 episodes sleeping through birthdays, holidays and Christmases.
Even though Jody may look awake during her episodes, they can be frightening for her
and those around her.
JODY: My husband has told me that it’s like I’m a totally different person, like I’m
just not there.
STEVEN: When Jody fell asleep on Christmas, it was horrible.
Yeah, she was awake and opening presents and stuff like that, but you could just tell she
wasn’t herself.
When she is coming out of it, she’s really sleepy, drowsy.
She walked really funny.
But when she is out of it, great, she is back to normal.
After, well, it can be a few days, a few weeks; it’s hard to say.
JODY: The sleeping part is not so much scary, it’s the recovery afterwards.
You are scared that you are not gonna to be out, back to normal completely.
The days just drag away.
COMM: While dealing with her episodes is difficult enough, Jody has the added frustration of
being undiagnosed, although she believes she has KLS, and has found support from other
sufferers on Facebook.
JODY: It is important for me to get diagnosed with KLS because it will be a weight off my
shoulders and my family’s shoulders, after 10 years of having these—we call them—‘funny
turns’.
PROF WALKER: The Klein-Levine Syndrome, or KLS, is a very rare condition in which people
have repeated episodes of sleepiness while they sleep almost continuously.
It’s perfectly possible to go into an episode of KLS and then to have no recollection or
very little recollection—very often what people say is that it’s almost like being
in a dream, they just have these little images they can remember.
The fact that she went into an episode during her pregnancy is perfectly possible; I think
it’s an indication of how real a symptom this is, how people will sleep through almost
anything, how to sleep is a deep and devastating occurrence during these KLS episodes.
COMM: But while Jody waits for a diagnosis, she is determined to make each day count.
JODY: When I’m not in an episode, we totally forget that I have got Klein-Levine Syndrome.
We live like a normal family.
When I have my episodes, that’s when our live is on hold.