Do not put anything in the mouth of someone who is having an epileptic seizure.

No, you should never, ever put anything in anyone’s mouth when they have an epileptic seizure. Because, contrary to what we usually think, there is no risk of swallowing your tongue. However, we can cause harm by inappropriately trying to help you.

The risk of “tongue swallowing” is one of the many myths associated with this neurological disease. Even today, in countries like Kenya, thousands of patients remain untreated because their seizures are explained as spells or satanic possessions. We have banished the supernatural, but stigmas around epilepsy still abound in the collective mind.

It is neither contagious nor does it imply intellectual disability

Epilepsy is one of the most common neurological diseases. About 50 million people worldwide suffer from it, according to the World Health Organization, 2023. However, despite its global prevalence, there are still many myths and false beliefs around this condition. People with epilepsy can work, play sports, it is not contagious nor does it lead to an intellectual disability. These beliefs cause a stigma in people with epilepsy that affects their personal, social, family, work and school lives.

One of the most widespread beliefs is that, during an epileptic seizure, they can “swallow” their tongue and, to prevent this, something must be placed in their mouth. However, this can cause more harm than help.

What you should do is put the person in a safe position, on their side, and make sure they do not hit their head on the ground.

What is epilepsy

Epilepsy is defined as “a brain disorder characterized by a continued predisposition to the appearance of epileptic seizures.”

An epileptic seizure (not an “epileptic seizure,” because there are no seizures of any kind) consists of the abnormal activity of a group of neurons in the brain that can cause different symptoms.

The origin of epilepsy can be due to genetic causes or due to unexpected causes such as a stroke or traumatic brain injury.

Video games do not cause epilepsy

What we do know is that video games do not cause epilepsy. At most, in people with photosensitive epilepsies (3% of epilepsies) flashes of light can trigger a seizure.

Due to the great variability of neurons that can have abnormal activity and the size of the brain, epileptic seizures can be very varied. If they start in the entire brain they are called “generalized seizures” and if they start in a specific part of the brain they are “focal seizures.”

The first are the best known, but they are not all the same. There may be no seizures and only tension of certain muscles (tonic seizures). Or that only those jerks that are called “clones” occur. Or also the union of both (tonic-clonic crises).

There are also other crises, called “absence”, in which a disconnection from the environment occurs for a few seconds, but without motor effects. In any case, we always talk about “epileptic seizures” and not “convulsions”, since not all seizures are accompanied by seizures.

Epilepsy and social and work life

It is still falsely believed that it is a contagious disease or that it is hereditary. But the truth is that the inheritance component is, in general, very low.

Perhaps the biggest problem we have is when we consider that people with epilepsy always have an intellectual disability or a mental illness. Something that does not happen in the vast majority of cases.

No more sick leave or more work accidents

With epilepsy you should work and study, because you can and because it improves the person’s quality of life. Despite this, unemployment among people with epilepsy is higher than the general population. Partly because it is believed that they have more sick leave and more accidents at work, when the data indicates just the opposite. It is true that there are some professions that have access limitations depending on epilepsy and the frequency of seizures, such as those that involve possession of weapons, firefighters, airplane, boat or train pilots and underwater activities.

Something similar happens with leisure and free time activities. Sport is a beneficial practice for physical and mental health and also for epilepsy. However, there are many people, including the patients themselves, who believe that they can no longer do sports or leisure activities as before the diagnosis. And this false belief causes only half of people with epilepsy to practice sports.

Ball sports, racquet sports, contact sports, athletics, Pilates, golf and bowling can be practiced without risk. Only those that involve motor, underwater, hunting or shooting and aeronautical are limited. Others, such as skiing, swimming, cycling, surfing or horse riding, can be done under supervision depending on the type of epilepsy and the frequency of seizures.

Isolation as a response

The stigma caused by these myths affects the quality of life, social, family, work and educational relationships, in many cases even more than epilepsy itself.

Many choose to isolate themselves. And in the child and youth population, the overprotection exerted by parents worsens isolation.

To make matters worse, people with epilepsy themselves also have, to a large extent, poor knowledge about their disease, with false beliefs that affect the control and management of epilepsy.

Consequently, psychoeducation and training on what epilepsy is and its characteristics are vital both in people with epilepsy and in the general population.

We are faced with a disease that in 70-80% of patients is well controlled with drugs, which allows them to have a completely normal life. If anyone’s life, with or without epileptic seizures, can be described as “normal.”

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