A
woman with a rare condition that means she collapses every time she
laughs fears she may have passed the rare illness onto her young son.
She suffers from a rare
neurological condition called cataplexy which means her body goes into a
state of total paralysis in response to strong emotions such as
amusement, surprise, anger and even love.
Just gazing in motherly
admiration at her two young children Charlie, five, and Ronnie, two,
brings on an attack leaving Kelly totally unable to move or speak.
Often, she finds herself
collapsed in a heap on the floor having injured herself on the way down
and once she nearly suffocated after landing face-down on the sofa. She
suffers up to 20 cataplexy attacks a day and has to have her mother or
brother around her all the time in case she collapses.
She also suffers from the
related condition narcolepsy which means she randomly falls asleep
throughout the day, no matter what she is doing
Kelly, 25, from Ashford,
Kent, said, “I’ve lost count of the number of times I’ve fallen asleep
face down in my dinner. I can’t even go to a restaurant with my
boyfriend in case I nod off at the table. It’s so embarrassing.”
She added, “Once I had an
attack of cataplexy in the supermarket and then another and another. I
must have had about 20 in a row and I think people must have thought I
was drugged or drunk. Every time I stood up, I collapsed again.
“When I have an attack, I
can see and hear but I can’t move or communicate at all. It can last a
few seconds or it can last for an hour.
“The worst times are when
there is no one around. I might be laid on the floor, completely
paralysed and the boys will be pulling all the food out of the cupboards
and there’s nothing I can do. That’s why I don’t like to be left alone
with the boys in case anything happens to me or them.”
Kelly first noticed the
narcolepsy when she was 16 and would fall asleep suddenly in front of
the television or while sat on the sofa, even after a long night’s
sleep.
Her condition worsened over time until the point where she never knew where she might nod off.
Kelly said: “I would be in the middle of eating my dinner and I would just fall asleep or I would fall asleep in the bath.
“I used to work on a
dunking doughnuts kiosk as a teenager and once I fell asleep while I was
frothing some milk for a cappuccino, which is impressive when you think
of the noise those machines make. I just fell asleep standing up and I
was lucky I didn’t burn myself on it.
“Eventually I saw a consultant who diagnosed me with narcolepsy and gave me some medication.”
Then, at the age of 19, she
fell pregnant with Charlie and everything changed. Suddenly, Kelly
would find herself going limp and heavy while she was holding her new
baby. Her head would become heavy and loll to one side and her arms
would flop to her sides.
She added: “I would have to call to my mum to come quickly and grab Charlie off me in case I dropped him.
“I would just be looking at him and thinking how much I loved him and then all of a sudden my arms would go floppy.
“I was really worried
because I was terrified of hurting him.” Over time, Kelly found her
attacks were becoming more frequent and more severe, causing her to
become completely paralysed and unable to speak whenever she had one. In
2007, she was officially diagnosed with cataplexy.
While cataplexy is
extremely rare, 70 per cent of sufferers also suffer from narcolepsy. In
addition, Kelly also suffers from poor short term memory and often
forgets what she did the previous day.
Like many epileptics, Kelly
needs constant supervision and cannot drive or even take a bath on her
own. However, she can suffer up to 20 attacks a day and is not entitled
to extra support for her condition.
Now she is worried she may
have passed the condition onto her son Ronnie, who suffered a fit in a
supermarket two weeks ago. He is currently awaiting tests to see if he
has inherited either of his mother’s rare conditions.
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