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Epilepsy: Out of the shadows

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By Evangeline T. Capuno

“Your daughter had a fall and is unconscious.” 

When Antonia, the mother, heard those words, her mind went blank. She couldn’t believe it; her daughter Jean was totally alright when she left her for school that morning. 

Thirty minutes later, Antonia was already at her daughter’s school. She found Jean lying unconscious on a wooden bench outside the teacher’s room. With some help from Jean’s classmates, she was able to get her into a car. She took her daughter to a nearby hospital.

Antonia was shocked to know that her only daughter has been suffering from epilepsy. After five days, Jean was discharged. Her seizures, which can be 8-10 times a day, were very unpredictable and frequent. 

“Whenever my phone rings,” Antonia says now, “my heart misses a beat fearing that my daughter is again having a seizure attack and may have injured herself.”

Epilepsy is the name for a group of disorders of the brain characterized by a tendency to have recurrent seizures or convulsions or “fits.” Epilepsy is universal, and is the most common serious neurological disorder. It is responsible for an enormous amount of suffering, affecting some 50 million people of all ages, especially among children, adolescents, and the elderly.

Epilepsy is a relatively common condition. In the Philippines, the estimated prevalence of epilepsy is 0.9%, according to some studies. This means that if the country has a population of 110 million, about 990,000 people have the problem.

Unfortunately, many Filipinos believe that what these patients have is a psychiatric disorder, or a form of mental retardation. Worse, a number of them even believe epilepsy is supernatural, caused by possession.

Demystifying epilepsy

Treated with fear, suspicion and prejudice; accused of possession by spirits: this is the fate of people with epilepsy. “We need to demystify epilepsy. The prejudice that people with epilepsy face is tragic,” disclosed the World Health Organization (WHO) in a statement.

The Department of Health (DOH) considers epileptics as people with disabilities, not unlike those with bipolar disorder, depression, schizophrenia, and other long-term and recurring mental or behavioral issues.

“Most people with epilepsy in the Asia and the Pacific region suffer tremendous social stigma,” the United Nations health agency deplored. “Moreover, some 70% of the 30 million people with epilepsy in the region do not receive any treatment, although cheap medicines exist. Their only ‘treatment’ may be exorcism, or herbs from traditional faith/folk healers.”

There is no Epilepsy Awareness Month in the Philippines. But in the United States, it is observed every November. 

Epilepsy is a common condition, dating back thousands of years – the word “epilepsy” comes from ancient Greece. Yet it is still poorly understood. Some of the fallacies surrounding epilepsy are that it is contagious, untreatable and completely inherited.

Risk factors

Among the risk factors for epilepsy, according to the American Association of Neurological Surgeons (AANS) are the following: premature birth or low birth weight, trauma during birth (such as lack of oxygen), seizures in the first month of life, abnormal brain structures at birth, bleeding into the brain, abnormal blood vessels in the brain, serious injury or lack of oxygen to the brain, and brain tumors.

Other risk factors include infections of the brain such as meningitis or encephalitis, stroke resulting from blockage of arteries, cerebral palsy, mental disabilities, seizures occurring within days after head injury, family history of epilepsy or fever-related seizures, Alzheimer’s disease, lengthy fever-related seizures, and alcohol or drug abuse.

Anything that damages the brain can cause epilepsy. Poet, novelist, and screenwriter Laurie Lee developed epilepsy after he was knocked down by a bicycle at the age of 10. He kept it a secret and it only surfaced when his papers were read by biographers after his death.

In a similar fashion, American congressman Tony Coelho developed epilepsy at age 16, possibly because of an earlier head injury. The brain disorder led to rejection by his family and the Jesuits for “possession by the devil.”

Understanding seizures

Seizures – caused by sudden, usually brief, excessive electrical discharges in a group of brain cells – are transient signs and symptoms of epilepsy.  During a seizure, the neurons in the brain (nerve cells that produce electrical discharges) may fire as many as 500 times a second, which disturbs the normal activity of neurons, glands, and muscles.

Patients with epilepsy experience more than one seizure type. This is because seizures are only symptoms. Therefore, it is essential that a neurologist diagnose a person’s type of epilepsy, just not the type(s) of seizure, to enable him or her to choose the best treatment possible.

Here’s a word of warning, though: objects should never be placed in a person’s mouth by anybody during a seizure, as this could result in serious injury to either party. Despite common belief, it is not possible for a person to swallow their own tongue during a seizure. However, it is possible that the person will bite their own tongue, especially if an object is placed in the mouth.

Diagnosis and treatments

A doctor’s diagnosis of epilepsy will be based on symptoms, physical signs, and the results of such tests as an electroencephalogram (EEG), computed tomography (CT or CAT scan), or magnetic resonance imaging (MRI).

If you think you are suffering from epilepsy, see a doctor immediately. Dr. Gerardo Legaspi, associate professor at the University of the Philippines College of Medicine, said that early diagnosis and treatment are vital, because epileptic seizures should be stopped before the patient suffers irreversible damage. Brain cells that die during a bout cannot grow back, and the functions that are controlled by that brain area may be permanently lost.

Most epileptic seizures are controlled through drug therapy. Currently, there are many different antiepileptic drugs available. “Choosing the right medication for an individual has become complicated,” the AANS stated on its website. “Choice of medication depends on a variety of factors, some of which include the type of seizure and type of epilepsy, the likely side effects of the medication, other medical conditions the patient may have, potential interactions with the patient’s other medications, age, gender, and cost of medication.” 

Diet may also be used along with medications. In certain cases, in which medications and diet are not working, surgery may be used.

In the Philippines, epilepsy carries a high disease burden. In the study entitled, “Treatment gaps and challenges in epilepsy care in the Philippines,” it was found that “there is limited access to antiseizure medications, mainly due to cost.”

Epilepsy surgery is an underutilized treatment option. During the study, there were only 20 epileptologists, with one epileptologist for every 45,000 patients with epilepsy. 

Famous epileptics

Many people with epilepsy have lived successful lives. Some historical figures who had the condition include Julius Caesar, Pope Pius IX, Alexander the Great, Vladimir Lenin, Ludwig van Beethoven, Fyodor Dostoyevsky, and Socrates. Film actor and director Danny Glover had epilepsy from age 15 to age 35.  Lindsey Buckingham, the guitarist and singer in the music group Fleetwood Mac, was taken to the hospital after a seizure while on tour at age 29.

Bjørnstjerne Bjørnson, aNorwegian writer and a 1903 Nobel Prize in Literature laureate, developed focal epilepsy following a stroke in the final year of his life. Brazilian novelist Joaquim Maria Machado de Assis had epilepsy all his life, but was ashamed to mention it, using euphemisms when writing to friends. It is believed he had complex partial seizures, with secondary generalization. – ###

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