Although epilepsy is one of the oldest medical conditions on record, it remains wrapped in mystery and myth. “Living with seizures is hard enough,” says Jim Armstrong, a talented Toronto musician, music producer and songwriter who lives with epilepsy. “The widespread misunderstanding of it causes a stigma that makes life more difficult.”
Many people with epilepsy would agree with Jim that the stigma is a problem. It isn’t uncommon to hear from someone who had a seizure in the workplace and is subsequently experiencing tension with colleagues or being treated differently by their boss, or a parent who is heartbroken because their once popular, happy child is now ignored and treated as an outcast after having a seizure in the lunchroom. There are, however, positive stories to tell as well, stories of people who had a seizure at church or at work and had bystanders rally around offering a helping hand, or others who approached the person after the seizure to learn more and find out what they can do to help more the next time. Thankfully, fear isn’t always the first reaction.
So what’s the difference between a good reaction and a negative one? “If people have an inappropriate reaction to a seizure it’s usually because they don’t understand what’s happening or just don’t know how to respond. Understanding is really the key,” says Fatima Santos, director of children and youth services at Epilepsy Toronto. What we don’t know or don’t understand typically scares us, and that’s really why separating the myths from the truths, and knowing the basics about epilepsy, is important. It makes us all feel at ease, creating a safer and more understanding community.
So let’s decipher fact from fiction.
The myth: Epilepsy is a form of spiritual possession.
The truth: Although most people have long recognized that epilepsy is not a form of possession, some cultures still believe this. Epilepsy organizations are working hard to educate all people that epilepsy is a medical condition, a disorder of the brain that causes sufferers to have recurrent seizures.
The myth: Epilepsy is contagious.
The truth: Epilepsy is not contagious and cannot be “caught” by coming into contact with someone who has seizures, just as diabetes or high blood pressure are not contagious.
The myth: You are born with epilepsy. The cause is genetic.
The truth: Anyone can develop epilepsy at any time. Some people are born with it, whereas others have their very first seizure in middle age. While genetics can play a factor, there are other more common causes of epilepsy, such as head trauma, brain tumor or lesion and stroke. In most cases—about 65 to 70 percent—the cause of epilepsy is not known.
The myth: Epilepsy affects intelligence.
The truth: People with epilepsy on average have the same level of intelligence as those without epilepsy. Learning can be made more difficult if seizures are frequent, or if medication has very pronounced side effects, such as causing drowsiness and excessive fatigue. However, epilepsy typically does not cause lower intelligence. In fact, some very talented and brilliant people have epilepsy, including some pretty influential historical figures such as Sir Isaac Newton, Vincent Van Gogh, Ludwig van Beethoven, Agatha Christie, and Napoleon.
The myth: Epilepsy is severe and people often have frequent seizures.
The truth: Some people do have frequent seizures, perhaps daily, while others are more controlled, only experiencing them once a year. Some people have excellent seizure management and haven’t had one for a decade or more. Medication for epilepsy offers good control to the large majority. There are some, however, who are not helped by treatment and have intractable epilepsy. Epilepsy affects everyone differently.
The myth: People with epilepsy can’t work, excel at school, have children or lead normal lives.
The truth: You’ve probably guessed by now that having epilepsy doesn’t preclude someone from doing well at school, excelling in the workplace, having a family and leading a busy life. Epilepsy is a medical condition that can be managed and therefore people with epilepsy can often lead normal lives.
The myth: There is one type of seizure—a convulsion.
The truth: In fact, there are more than 40 different types of seizures, and a convulsion is not the most common kind. Seizures can take many forms including a blank stare, involuntary movement, altered consciousness, a change in sensation or a convulsion.
The myth: During a seizure, you can swallow your tongue.
The truth: it is impossible for someone to swallow their tongue during a seizure and therefore nothing should ever go into a person’s mouth during a seizure.
The myth: Seizures are always medical emergencies and you should call 911.
The truth: Actually, seizures are most often not medical emergencies and an ambulance is not always required. You should call 911, however, if: a seizure lasts five minutes or longer or repeats one after another without the person regaining consciousness in-between; it is someone’s first seizure; the person is injured during the seizure (through a fall, for example); the seizure happens in water; or the person is pregnant or has diabetes.
Web exclusive February 2009 Best Health magazine