Persons with epilepsy: Standing tall, marching on

MANILA, Philippines - In its desire to get persons with epilepsy to stand tall and be proud of who they are and what they have accomplished in spite of their struggles, the Philippine League Against Epilepsy (PLAE) gives out the Epilepsy Exemplar Award every two years to patients who have shown admirable confidence, outstanding achievements in school or in the workplace, and dedication to promoting awareness of epilepsy despite their condition.

One such person who has received the award is Apple Valencia, a 29-year-old employee from Quezon City. She was among the four who received the award in 2006.

As she recounts, “I did not expect to get any award at all. I remember just telling my doctor how happy and excited I was with my experiences in attending PLAE-organized activities and then he started talking about getting me nominated and eventually, I got the award.”

Prior to getting involved with PLAE, Valencia hated the fact that she had epilepsy. She had no friends when she was still in school. Her classmates and teachers not so much as feared her, but feared what could happen to her while in their company; they didn’t know what to do when she had a seizure.

She was quiet and reclusive, rarely going anywhere other than her house and school. There was one incident during her college years when she woke up, surprised to find herself in a hospital with her face and body covered in blood.

Apparently, on her way home as she was waiting for a tricycle outside her school, she had a seizure, collapsed, and then hit her face on a rock. She required stitches on her face although fortunately, they did not leave any permanent scars.

Later, she faced difficulties in finding employment due to her condition. There was one instance when she was rudely terminated from a job after less than a week of being hired. She had an absence seizure as she was being trained by one of her co-workers.

During an absence type of seizure the patient suddenly freezes for a brief period. That short time, however, was already long enough for misinformed co-workers to start assuming things and because they lacked the correct information about epilepsy, people at her office got scared.

She received her letter of termination the day after, citing a number of reasons, among which, epilepsy was the most significant. This incident frustrated her so much that she threw a fit of rage in her doctor’s office.

That was when her doctor suggested that she attend patient forums, support groups and other activities organized by the PLAE.

The PLAE is a non-stock, non-profit organization of health professionals who volunteer their services for training, teaching and research on epilepsy.

They promote epilepsy awareness in the country through school seminars and health forums.

The PLAE has year-round activities not only for doctors, barangay health workers, nurses, and students, but also for the patients and their families.

“I attended every single activity and I always asked a lot of questions. I learned so many new things,” Valencia says.

Her doctor noticed the change in her after she attended the epilepsy fora and support group activities. From someone who was introverted and angry, she became a cheerful, positive and confident person. She was nominated for the Epilepsy Exemplar Award by her doctor, and the rest is history.

After receiving the award, she became a full-pledged member of the Epilepsy Awareness and Advocacy Inc. (EAAI), the “child” of PLAE as Valencia referred to it.

The EAAI is the lay arm of the PLAE and consists of patients who are interested in sharing their experiences as persons with epilepsy with others.

In this group, Valencia met other people with epilepsy. She learned that they share some common experiences, struggles, frustrations and pains.

Together, they developed friendships, which helped them get through the rough times. Up to this day, Valencia actively participates in PLAE and EAAI activities.

Novartis Healthcare Philippines, a multinational pharmaceutical corporation, supports the PLAE in providing quality healthcare for patients with epilepsy.

The PLAE will hold this year’s Exemplar Award ceremonies on Sept. 8 as part of the celebration of National Epilepsy Awareness Week.

For more information on PLAE and EAAI and their activities, write to [email protected] or visit their website at www.plae.org.ph. EAAI also maintains a Yahoo group.