Pushing boundaries toward seizure freedom: The Philippine League Against Epilepsy after a decade

MANILA, Philippines - The Philippine League Against Epilepsy (PLAE) was established in 1997. It is a non-profit organization of health and health-related professionals committed to improve the quality of life of persons with epilepsy through education, research, prevention, advocacy, and delivery of optimal healath care. It is the Philippine chapter of the International League Against Epilepsy (ILAE).

To reach its goals, the PLAE has employed numerous programs, foremost of which is the launching of the Epilepsy: Out of the Shadows Campaign of the Philippines to address the lack of information and misunderstanding of epilepsy as a neurologic condition and to bring out in the open the discrimination and stigma patients with epilepsy suffer from.

The PLAE, then under the leadership of Dr. Leonor Cabral-Lim of the UP-PGH, launched a tri-media campaign consisting of TV infomercials and radio ads, brochures and press releases.

A PLAE website was created and an Epilepsy Hotline for patients with questions about epilepsy was inaugurated and maintained for one year.

What made this year more momentous was the signing by then President Gloria Macapagal-Arroyo of Presidential Order 230 declaring the first week of September of every year as National Epilepsy Awareness Week.

In the same week, the first National Epilepsy Congress for doctors was held. It was graced by world-renowned experts on epilepsy like Dr. Martha Morrell from the United States, and attended by around 200 delegates.

The PLAE continues to hold its congress every two years, inviting international experts on epilepsy to share their knowledge with Filipino doctors.

Every year since then, the PLAE celebrates National Epilepsy Awareness Week (now on its ninth year) with walkathons, epilepsy seminars and lay forum held in different provinces nationwide by PLAE’s dedicated doctor-volunteers.

This is the yearly occasion for a concerted, intensive and vigorous effort to educate patients, their caretakers and families, physicians and other personnel in the medical field as well as to lobby with politicians, health policymakers, educators, businessmen and the general public on what epilepsy really is.

In 2004, the Epilepsy Manager Project was conceptualized and implemented through the dedication of Dr. Maria Felicidad Soto, one the country’s leading epilepsy experts and PLAE’s founding members.

This project brings epilepsy specialists from major hospitals to training of government doctors/rural health physicians or interested practitioners in far-flung areas of the country in the diagnosis and treatment of such a specialized condition as epilepsy.

But PLAE has proven that it can be done. The hands-on tutorial type of training consists of didactic lectures and monthly clinic supervision.

Based on the feedback from the graduates, this program really helps develop their confidence in managing epilepsy. They are given pre– and post-examinations to determine how their competency has improved with the training after 10 months.

So far this project has run for four years and has produced 17 rural health physicians, competent and confident in the management of epilepsy and still continuing to hold epilepsy clinics in their own provinces.

The Epilepsy Camp brings together patients with epilepsy as well as their families and caregivers in a day of learning about epilepsy and fun activities.

The Epilepsy Camp started earlier than the beginning of PLAE and was first held in the Philippine Children’s Medical Center in Quezon City under the leadership of Dr. Lillian Lee.

It aims to provide a venue where patients and families can share their experiences and talents, and have fun together in a safe environment supervised by their doctors and special education teachers.

It is like a support group where members come together and encourage one another through their experiences. Fun and games also abound in this camp. In ends with a bonfire that seals their success for the day and children present their prepared numbers.

In the past five years, the PLAE has worked together with the doctors of PCMC to bring this Epilepsy Camp concept in several provinces. It has been held in Davao, Iloilo and Nueva Ecija. This year, it will be held at Almond Inland Resort in Butuan City.

Truly, when people and bring their energy, resources and expertise together, great things can be achieved. From these camps, many patients and their families realize how important it is to belong to a community, which understands epilepsy.

Then, there were only two epilepsy support groups: the PCMC and a newly founded Epilepsy Support Group of Cebu. But patients began clamoring for support groups in their hospitals and provinces.

The PLAE conducted training seminars on how to establish self-help groups for their doctor-members, community health leaders, patients and parents. After a few years, around 15 other support groups were born in PGH, Makati, Lucena, Naga, Cebu, Iloilo, Dumaguete, and Ozamis, among others. 

In 2005, the patient arm in the epilepsy movement was formally organized and named, the Epilepsy Advocacy Awareness Inc. (EAAI), a nationwide umbrella organization for support groups for persons with epilepsy.

In 2004, the PLAE decided to further promote the stature of patients with epilepsy in the eyes of the misinformed public by holding the Epilepsy Exemplar Awards.

These awards are given to showcase special patients with epilepsy who can set an example on how successfully controlling seizures by complying with their medical management can lead to full, productive and inspiring lives and being an outstanding member of society.

These awards are given out every two years. Previous recipients included a barangay health worker, a nurse, a physician, an artist, entrepreneurs, and an events coordinator.

The PLAE awarded its fourth set of Epilepsy Exemplars in a formal ceremony in Makati City yesterday.

Many other novel projects have been held in the past: an Epilepsy Idol contest for those persons with epilepsy with singing talents; and Chefs-on-Parada benefit dinner where physicians showcased their culinary expertise in an amazing benefit dinner that was able to raise funds for indigent patients with epilepsy.

These are just a few of the activities of the PLAE that have benefited so many people — directly and indirectly in the past 10 years or so.

What lies in the future for the Philippine League Against Epilepsy?

Under the current leadership of Dr. Josephine Casanova-Gutierrez, the organization wants to be known not only as a group which promotes epilepsy awareness, but also as a source of expert training and information for higher standards of care and advocacy for epilepsy.

Although the projects will continue, the PLAE will push to promote epilepsy awareness in the upcoming generation through the Epilepsy Caravan, a program geared toward educating grade school students and their teachers about epilepsy through a storybook, song/dance-video and lecture medium.

Hopefully in the years to come, there will be a better informed public and less discrimination and ostracism will be experienced not only in schools, but also in the workplace.

Measures are already being in put in place to establish a National Epilepsy Registry, with the objective of generating data about epilepsy that are vitally needed for research, health program planning and lobbying for changes in health-related policies.

The PLAE has also formed the Epilepsy Surgery Study Group, which aims to study how epilepsy surgery, an important alternative in the treatment of drug-resistant epilepsy, can be promoted in our country in spite of limited resources.

In 12 years, the PLAE has achieved so much more than what its founding father, Dr. Martesio Perez, would have dreamed possible in his lifetime.