Stigma of epilepsy makes sufferers hide condition

PUBLISHED : Sunday, 23 December, 2012, 12:00am
UPDATED : Sunday, 23 December, 2012, 11:50am

I have taught several students who were epileptic. Interestingly, no parent has notified me about how they would like their child to be cared for should they have a seizure in class. Yet when a student is diagnosed with other conditions such as diabetes or attention deficit hyperactivity disorder, their parents have prudently informed me about the signs I should look out for and the preferred care they would like to be given to their child.

It is such hesitancy about being identified with the disorder that prompted Claudia Schlesinger to start the Hong Kong chapter of the epilepsy charity Enlighten 10 years ago.

She was also inspired by the example of her brother-in-law, former rugby international Tom Smith, who speaks openly about his condition to raise public awareness.

"I want other sufferers to know that epilepsy doesn't have to be a barrier to achievement," he said.

Epilepsy is a common neurological condition that interrupts the electrical activity of the brain. It is neither contagious nor a mental illness.

A 2006 population-based study by Gardian C.Y. Fong and his team from the University of Hong Kong found that its prevalance in Hong Kong is greater than previously thought. This underestimation, the researchers suggested, was due to negative public attitudes toward people with epilepsy, leading some patients to avoid disclosing information during the survey.

They often prefer to keep their condition hidden because of the stigma they face, socially and professionally, that may result in isolation and even loss of their job or family support.

The fact is, people living with epilepsy can lead normal lives if the seizures are well controlled.

When two of my students had their first seizures in school, one was with an older sibling and the other was with friends. In both instances, children who witnessed the incidents reported feeling scared.

Enlighten works to remove this fear through community education.

The group's education and training manager Alice Yip runs a programme with primary schoolchildren across the city, organising photo and postcard design contests to raise awareness. A steady increase in participants over the past three years is a measure of its success. Another indicator is the supportive attitude and increased knowledge that students show in "before" and "after" feedback forms.

In secondary schools, students are given a platform to learn what epilepsy is and how to manage the fits through Yip's workshops.

Enlighten provides one-to-one counseling and a support network for people with epilepsy. It teaches them to have the courage to tell classmates and teachers so they can identify the onset of a seizure and tell people what needs to be done.

Among its notable successes is having the Chinese term for epilepsy officially changed in 2010 from dean gan to no gan to help eliminate an association with craziness. Then, there is the issue of insurance cover from companies and long waits for appointments for ongoing treatment at government hospitals that need to be addressed.

"What we need in Hong Kong is a celebrity or a high-profile person with epilepsy to step forward," Schlesinger says, citing US vice president Joseph Biden who tapped into his own medical history and former White House colleague David Axelrod, whose daughter Lauren lives with epilepsy.

My Christmas wish is that we accept that people with epilepsy are just like us. And that we can educate ourselves on how to help should a child, colleague, friend or neighbour have a seizure.

A happy Christmas to you all.

Anjali Hazari teaches IB and IGCSE biology at the French International School