International Epilepsy Day is an annual event organized on the 2nd Monday of February by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) to raise awareness about epilepsy and its impact on individuals, families and communities around the world.
Epilepsy affects almost every aspect of the life of the person diagnosed with the disease. For many people living with epilepsy, the stigma attached to the condition is more difficult to deal with than the condition itself.
Misconceptions and myths often contribute to the stigma surrounding epilepsy. For example, many people assume that epilepsy is a mental illness, that it limits activities, or even that epilepsy is contagious.
This year’s International Epilepsy Day campaign seeks to dispel these myths.
Background Information:
Epilepsy is one of the world’s oldest recognized conditions, with written records
dating back to 4000 BCE.
Epilepsy is a chronic noncommunicable disease of the brain that is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
Seizure episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day.
One seizure does not signify epilepsy (up to 10% of people worldwide have one seizure during their lifetime). Epilepsy is defined as having two or more unprovoked seizures.
Epilepsy is a broad term used for a brain disorder that causes seizures. There
are many different types of epilepsy. There are also different kinds of seizures.
Epilepsy can be caused by a variety of factors, including genetic factors, head
injury, brain infection, stroke, and abnormal brain development.
Epilepsy has affected several famous people, including Julius Caesar and
Vincent Van Gogh.
Key Messages:
Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
Nearly 80% of people with epilepsy live in low- and middle-income countries.
It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
The risk of premature death in people with epilepsy is up to three times higher than for the general population.
Three quarters of people with epilepsy living in low-income countries do not get the treatment they need.
An estimated 25% of epilepsy cases are preventable.
Fifty percent of adults with epilepsy experience social stigma as a result of their
epilepsy.
Some common misconceptions about epilepsy are that it is contagious, that it is
a mental health condition, and that those with epilepsy cannot lead normal lives.
For people with epilepsy, negative attitudes toward epilepsy have significant
social implications and impair quality of life.
A person with epilepsy may experience reduced access to educational
opportunities, a lack of driving privileges, and difficulty entering particular
occupations.
Many countries have laws reflecting centuries of misunderstanding about epilepsy, including those allowing marriages to be annulled because of epilepsy and those denying access to restaurants, theatres, recreational centers, and other public places.
Epilepsy stigma can significantly delay diagnosis and treatment as some people
are reluctant to seek medical help because of fear of discrimination.
Epilepsy-related stigma exists at all societal levels, impairing the quality of life
and social well-being of people with epilepsy and their families.
Myth vs Fact
Myth: Epilepsy is contagious
Fact: Epilepsy is NOT contagious – you can’t catch epilepsy from someone else.
Myth: Epilepsy is a form of mental illness
Fact: Epilepsy is a neurological condition that affects approximately 50 million people
worldwide.
Myth: All people with epilepsy must avoid flashing lights.
Fact: Only about 3-5% of people with epilepsy are photosensitive. As a result, the vast
majority of people with epilepsy do not need to avoid flashing lights.
Myth: All seizures involve falling to the ground and convulsions
Fact: A convulsive (or generalized tonic-clonic seizure) in which the person becomes
unconscious, rigid and shakes is just one of the many different types of seizures.
Seizures involve different parts of the brain and depending on which part of the brain is
involved, different physical symptoms can occur.
Myth: You should put something in a person’s mouth during a seizure.
Fact: This myth stems from a mistaken belief that during a seizure, people can swallow
their tongue or suffocate. In fact, it’s physically impossible to swallow your tongue and
you should never force something into the mouth of someone having a seizure or try to
hold their tongue. You could damage teeth, puncture gums, obstruct someone’s airway,
and even break their jaw, as well as injure yourself in the process.
Myth: Epilepsy will affect a person’s ability to take part in sports or other leisure
activities.
Fact: In most cases, it won’t. A lot will depend on the degree of seizure control and the
type of sports activity involved. Everyone’s epilepsy is different, but as long as it’s safe
for the individual to take part and they let their coaches and teammates know how best
to help them in the event of a seizure, then they can enjoy their chosen sport.
Useful Links:
Link to the International Epilepsy Day website:
https://internationalepilepsyday.org
Link to WHO fact sheet on epilepsy (updated on 9 February 2023):
communitymedicine4all 