H
ong Kong teenager
Noddy Chui was nine
years old when he
experienced his first
epileptic seizure. While sitting with
his father doing homework, Noddy
suddenly became very rigid, his lips
turned blue and he appeared to blank
out. After several minutes he came
to, then fell exhausted to his desk. His
worried parents immediately took him
to the emergency ward, and following
several tests they were given the news
their son had epilepsy.
“I was very frightened, as I didn’t
know anything about it, what it meant
or how to deal with it,” says Noddy’s
mum, Pina. “I really couldn’t sleep
much after his diagnosis, terrified he
would have a seizure in bed and we
wouldn’t know.”
Even worse for Pina was her son’s
initial reaction to the news. “Noddy
said he felt like a useless boy, and he
One local charity aims to encourage children with epilepsy to
live open and fulfilling lives, and hopes to dispel common myths
surrounding this misunderstood condition, writes
Katrina Shute
.
became very anxious and started
having nightmares about seizures,”
says Pina. “He became scared as he
didn’t know when the next one would
happen.”
The fear factor
While fear and confusion might be
a common reaction for parents and
children after a diagnosis of epilepsy,
it’s made worse in Hong Kong where
many myths surround the condition.
In fact, up until 2010, the Chinese
character for epilepsy literally
translated as “crazy”.
Claudia Schlesinger is the chief
executive of local charity Enlighten
– Action for Epilepsy. She says
Enlighten’s mission is to provide
support and remove prejudice through
community education. “We really
need to change long-held superstitions
about epilepsy,” she says. “Many
people believe it’s contagious and
HongKong
Hiding
in
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