Tomorrow is the first International Epilepsy Care Day, an event
proposed by the China Association Against Epilepsy (CAAE) in
2006.
Promotional campaigns are expected to take place in 35 cities
across 16 provinces.
While China will pioneer this year's efforts, the International
League Against Epilepsy (ILAE) will promote the event to the world
next month, when its annual International Epilepsy Symposium will
be held in Singapore, Zhang Hui, the CAAE's vice-secretary general,
told China Daily.
The day's theme is reducing the stigma attached to the disease
and encouraging patients to step out of the shadows.
"For them, the greatest pain is psychological rather than
physical," Wang Yuping, director of Beijing Xuanwu Hospital's
epilepsy center, said.
The stigma comes from the patients themselves and society as a
whole, Wu Jianzhong, a professor at the Beijing Neurosurgery
Research Institute, said.
Research has shown that 89 percent of epilepsy patients and 76
percent of their family members have experienced some level of
humiliation, he said.
Social misunderstandings are just as prevalent, Wu said.
A study conducted by his institute found that 87 percent of
parents said they would oppose their child marrying an epileptic,
57 percent were against their children studying or playing with
them and 53 percent said epileptics should not be allowed to work
like "ordinary" people.
Li Li, an epilepsy sufferer from Guangzhou, said she has
experienced the acute pain caused by such myths and
misunderstanding.
She said she had been rejected from school and fired from work
after years of trying to hide her condition.
The prejudice stems from a lack of public awareness about the
disease, Wang said. Many sufferers, for example, simply give up
because they think epilepsy is incurable.
Others, meanwhile, turn to unregistered clinics for "magic
pills", in the belief that they will completely eradicate the
condition, he said.
About 70 to 80 percent of patients' epilepsy attacks can be
controlled after three to five years of continual medication, Wang
said.
"About half of those who experience not a single attack within
that period are considered to be fully recovered.
"Some 20 to 30 percent of the other half are suitable for
surgery, and our recovery rate afterwards exceeds 80 percent," Wang
said.
Among the world's 50 million epileptics, 40 million live in
developing countries. According to the CAAE, about four
million of China's nine million sufferers "have not received
rational or proper therapy".
(China Daily June 27, 2007)