Nov 10, 2009

Understanding epilepsy

by Katie Bell

In the Information Age, it is surprising that not many people are aware that November is Epilepsy Awareness Month. It is even more surprising that many Americans do not fully understand what epilepsy is: a neurological disorder that has been around since Biblical times should have more notoriety, but it does not.

Epilepsy is a group of related disorders characterized by a tendency for recurrent seizures. Seizures are the result of abnormal movement or behavior due to unusual electrical activity in the brain. Seizures range from mild staring spells to convulsions, according to the National Centers for Disease Control and Prevention (CDC).

The most common misconception about epilepsy is that a seizure always involves someone on the ground thrashing uncontrollably. This could not be farther from the truth. There are more than 25 different types of seizures. The two most common types of seizures are grand mal seizures and petit mal seizures. Grand mal seizures are characterized by convulsion, while petit mal seizures are characterized by mild staring spells.

Epilepsy claims the lives of almost as many people in the United States annually as breast cancer, according to the 60 Minutes segment “Epilepsy: Finding the Cure.” More Americans suffer from epilepsy than from Parkinson’s disease, cerebral palsy and multiple sclerosis combined. This is a shocking statistic. Many people are uncomfortable at the mere thought of the word epilepsy, let alone joining the cause to increase awareness for the benefit of the 3 million Americans who suffer from it.

Epilepsy is a common neurological disorder. In 2009, nearly 150,000 new cases will be diagnosed in the United States, according to the CDC.

In years past, there was little funding, public or private, donated towards epilepsy research. Today, organizations such as the National Epilepsy Foundation (NEF) and Citizens United for Research in Epilepsy (CURE) are stepping up to make a difference. CURE was founded by Susan Axelrod and two other mothers whose children have epilepsy. It is a nonprofit organization whose mission is to raise awareness of and fund research for the disorder. These organizations started the epilepsy awareness movement in America, but there is still much more work to be done.

“Why can’t they stop a seizure?” Susan Axelrod asked Katie Couric during the 60 Minutes segment. “I mean, this is a disease that’s been known since Biblical times. And it just seemed the research, and the ability to treat and control is so primitive.”

One million sufferers do not respond to any form of treatment, and whether people realize it or not, there is a stigma attached to epilepsy.

“You know, it was viewed — even into this century — widely as sort of demonic possession... It’s so frightening to see someone have a seizure. And it makes people uncomfortable,” White House Senior Adviser David Axelrod said, whose daughter, Lauren, 28, has had epilepsy all her life.

The NEF is on a campaign throughout the month of November to use social networking Web sites such as a method of raising awareness. NEF is also promoting their “Speak Up, Speak Out” campaign which is a network of advocates whose mission is to ensure that people with epilepsy are able to experience life to the fullest.

People have a natural tendency to shy away from things that are frightening or strange. While epileptic seizures are abnormal, they are not something to be afraid of. Unfortunately for epileptics, people have shied away from discussing epilepsy for far too long. Discussion brings awareness, which brings about actions, which produces results in the form of medical research. It is vital, now more than ever, to discuss a subject that is taboo in many parts of the world.

Contact Katie Bell at

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