Decades ago, epilepsy was shrouded in superstition and ignorance. People who experienced seizures were often perceived by society as possessed by evil spirits, and it was only with the passage of time that science was able to explain the true nature of this condition. Today we know much more, but is it enough? Have the myths been completely dispelled? What do those living with this diagnosis face on a daily basis? Associate professor at Yale University and epilepsy specialist Aline Herlopian discusses this on the program “Did You Know?”
What happens in the brain during a seizure
“Epilepsy is the result of a disturbance in the brain's electrical activity,” explains Aline Herlopian. “Normally, electrical impulses are coordinated and transmitted between different parts of the brain without interruption. But in epilepsy, they suddenly start in one area and spread rapidly throughout the cerebral cortex. It's like a short circuit — a sudden and powerful burst of electricity that disrupts the brain's functioning.”
This malfunction is also reflected in the body: a person may suddenly lose their speech, fall, or start having seizures. But, according to Herlopyan, the most important thing is that epilepsy originates and progresses in the brain, and it is this knowledge that makes it possible to control it effectively. “We know how to deal with it,” she says. “Modern drugs can suppress seizures, which means that people with epilepsy can live normal, full lives.”
Causes and forms of epilepsy: important information for everyone
Epilepsy is not a single disease, but a spectrum of conditions with different causes and courses. As Herlopyan notes, the causes can vary greatly. Sometimes it is a hereditary factor or a genetic mutation that occurred during fetal development. In other cases, epilepsy develops as a result of head injuries, tumors, or brain damage acquired during life.
“It is very important to understand,” she emphasizes, “that epilepsy can begin not only in childhood or adolescence. It can also manifest itself in adulthood and even in old age.” That is why early diagnosis and careful attention to symptoms are especially important. There are two main types of epileptic seizures: generalized and focal. Generalized seizures affect both hemispheres of the brain from the outset. These include tonic-clonic seizures, absences, myoclonic and atonic seizures, in which a person may suddenly lose muscle tone and fall.
Focal, or partial, seizures start in a specific area of the brain. They may occur with or without loss of consciousness. In some cases, focal seizures develop into secondary generalized seizures, which eventually spread to the entire brain. “Understanding these differences helps not only doctors but also patients themselves,” adds Herlopyan. “It makes it possible to choose the right treatment strategy and improve quality of life.”
How to help during a seizure: dispelling myths
There are many myths associated with epilepsy that are not only useless but also dangerous. One of the most common is trying to hold a person's tongue during a seizure. “This should not be done. The tongue does not get swallowed, as was previously believed,” she notes. In reality, attempts to put something in the mouth or hold the tongue can cause injury to both the person having the seizure and the person providing assistance.
The correct actions during an epileptic seizure are simple but vital. The person should be gently turned onto their side to prevent suffocation and ensure that their airways are clear. Make sure there are no dangerous objects nearby and wait for the seizure to end.
“We need to understand clearly that epilepsy is not a disgrace, but a chronic disease, like diabetes, high blood pressure, or heart problems,” says Herlopyan. "People should not feel ashamed or embarrassed about their seizures. The main thing is to know what to do and provide support, not condemnation.“
Knowledge against fear and shame
Despite medical advances, people with epilepsy still face prejudice. ”In the past, this was explained by a fear of ‘demonic possession,’" says Alina Herlopyan.
“But, unfortunately, even today, when scientific understanding of the disease is widely available, the stigma has not disappeared.” According to her, the reason for this is a lack of accessible and understandable information. “It is very important that knowledge about the disease is disseminated clearly and concisely,” she emphasizes. “When people understand what is happening to them, they are less afraid and ashamed to seek medical help, begin treatment, and receive the care they need.” It is especially important that loved ones are aware of this information. Without family support, according to Herlopyan, patients may encounter difficulties in following their doctor's instructions.
“Some are embarrassed to tell even their relatives about their diagnosis, don't buy their medication, and miss appointments. Without treatment, attacks become more frequent and the condition worsens. What's more, loved ones don't understand how they can help in the event of an attack,” she explains.
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