Taking epilepsy out of the shadows

MANILA, Philippines - Have you actually been near a person who was having epileptic seizures? It can look very scary.

My earliest experience with epilepsy was from being around a classmate I shall name RV, who was around 10 years old. He was quite a chubby, phlegmatic type of boy, who stuttered when called to recite and was always very shy. He was not so outstanding in class, barely making passing marks and was one of the slow readers in Group D. He was one of fraternal twins.

Twice or thrice in a school year, he would suffer from generalized convulsions in the classroom. My teacher called him epileptic and that’s when I heard the word first.

When he had his fits, the whole class stopped. He would tumble from his chair unconscious, with his head bowed and arms stiff, breathing in loud snortles and gasps, his mouth frothing.

But our classroom teacher was such a cool collected guy. He would support his back, lay him down flat across two desks or tables and wait for the violent seizures to subside. During those days, it was thought correct to put a towel or spoon inside the mouth of someone who was seizing.

Meanwhile, the whole Grade 4 class would stand around him, watching him suffer and survive the brief earthquake in his brain. Then we would heave a sigh of relief as a class, when all the muscle contractions and gasping stops, and he flickers his eyes and opens them. His twin sister would wipe his mouth of froth; he would sit up, look helplessly around him, quiet, embarrassed. Then my teacher would say, “OK class, let’s get back to work.” No big deal.

A few years later, my own brother developed epilepsy. Same thing happened. But unlike our entire household, I was quite used to seizures by this time. Although I was too young to appreciate how the brain works and why it goes into a seizure like that, I was quite comfortable and unafraid when it happened to my brother. I learned not to panic because of the example of my grade school teacher who was calm when handling that young boy with seizures.

Epilepsy is a common brain disorder. An estimated 50 million people in the whole world is affected by epilepsy. In the Philippines, an estimated 750,000 people have this disorder. It is one of the most common reasons for medical consultation in the neurologist’s clinic, especially among children.

Epilepsy can affect anybody at any age. In the United States, 45,000 children under the age of 15 develop epilepsy each year. By the age of 20, about one percent of the population will have epilepsy. By age 75, about three percent of the population will have epilepsy and around 10 percent would have suffered from a seizure in their lifetime (cumulative risk incidence, US).

Epilepsy is caused by sudden surges of abnormal electrical activity in the brain and leads to brief attacks of convulsions, involuntary motor movements, loss of consciousness or abnormal sensations or strange behaviors.

It can be caused by a variety of brain diseases like head trauma, meningitis, encephalitis, strokes, brain tumors or brain hemorrhage. In some cases, it can be genetic or familial. In about 40 percent of cases, no cause can be found.

Because of the suddenness of its onset and its very strange and overwhelming presentation, people in the past have misconstrued epilepsy as being a form of spiritual possession, witchcraft or a mental disease. 

Persons with epilepsy were looked at with apprehension or disdain. People even thought that epilepsy was contagious; they would not let their kids play with kids with epilepsy.

Persons with epilepsy were prohibited from donating their blood in blood banks. They were not granted sports club memberships. In the US during the 1900s, they were banned from getting married and having children for fear that they might produce offsprings with the same disorder.

They were part of the population who had to undergo forced sterilization, along with the criminally insane, the syphilitics and those with mental retardation. Would you believe the marriage ban for persons with epilepsy was repealed in Missouri only in 1980? Up to the present times, they continue to suffer from discrimination in the workplace and in schools.

Somebody once said a person with epilepsy is a double-victim: he is a victim of his own brain’s unpredictable condition and he is a victim of stigma from the world outside.

In 1996, the International League Against Epilepsy, together with the World Health Organization, launched the “Epilepsy: Out of the Shadows” campaign against discrimination, stigma and misinformation about epilepsy.

The Philippine League Against Epilepsy is the lead organization in the country that implements this campaign. Through its efforts, on Aug. 24, 2002, then President Gloria Macapagal-Arroyo signed Presidential Proclamation 230 declaring every first week of September as National Epilepsy Awareness Week.

During this week, lectures on epilepsy for patients and their families, barangay health workers and hospital personnel are carried out by 43 Public Awareness Volunteers for Epilepsy nationwide.

A special educational program for grade school children called “Epilepsy Caravan” runs in several schools this September.

Hopefully, with the initiatives of these compassionate agencies, epilepsy can be taken out of the shadows and into the light.

For more information, go to www.plae.org or e-mail at [email protected].