As featured on the Dr. OZ Show, February 15, 2010
Seizure First-Aid, “WOULD YOU KNOW WHAT TO DO?"
50 million people worldwide have it.
And you probably do not know what it is.
In our country, over 3 million people live with it every day.
It costs us an estimated $12.5 billion directly and indirectly, mostly from lost productivity at work and at home.
And more than likely, you still do not know what it is.
Every year, another 200,000 Americans are diagnosed with it.
Of which, 45,000 children are under the age of 15.
In Florida, 375,000 residents have it, already at epidemic proportions.
You would know what it is if your child, parent or a loved one was diagnosed with it.
It is epilepsy.
The personal impact of Epilepsy was painfully depicted by Jim Abrahams when he said, "For a parent there is no such thing as a gentle entry into the world of Epilepsy. One day your child has his first seizure. From there it is terrifying, agonizing, devastating. It's not intellectual. We cope with whatever innate coping skills we have been given. Eventually we learn that information is only forthcoming on a sort of need-to-know basis. We learn to drum the prognosis from our vocabulary. We make lists of questions to ask during our rushed audiences with our physicians, but we are so naïve as to the complexity of the disease that our questions often miss the mark and so frazzled by our emotions that logical processing of answers is all but impossible. So much of what we are told is too complicated. So much seems vague. The alternatives seem so limited. The ground rules seem so different."
When actor Danny Glover told a friend he would be speaking at the 33rd Annual Epilepsy Foundation National Conference, the friend got very quiet and then asked, "The Epilepsy Foundation? Why?" "Because I had epilepsy" Glover replied. Danny Glover stood there, moments passing slowly with more silence, until his friend said, "Boy, that's a big thing you had to carry around with you" "Yes," Glover said, "Yes it was".
As keynote speaker for the conference's opening session, Glover described what it was like having epilepsy. "From the time I was 15 years old to the time I was 35 years old, I suffered because I had epilepsy," he said.
Nevertheless, Danny Glover became an international big screen actor best known for playing opposite Mel Gibson in the famous Lethal Weapon films. He also starred in Places in the Heart,Escape from Alcatraz,The Colour Purple and Grand Canyon.
Other well known personalities with epilepsy include rock star Neil Young, actor Richard Burton and Ernest Hemingway's granddaughter, Margaux. Centuries past have chronicled great achievers believed to have had epilepsy including Alexander the Great, Julius Caesar, Sir Isaac Newton, Pascal, Handel and Vincent Van Gogh. Great writers such as Charles Dickens, Fyodor Dostoevsky, Lewis Carroll, Leo Tolstoy, Jonathan Swift and Danté were afflicted with epilepsy. In fact, Dostoevsky describes no less than 17 accounts of epileptic seizures in his novels. Lewis Carroll seems to suggest the aura of a temporal lobe seizure in Alice in Wonderland.
Why has this affliction that has been around for centuries been so widely misunderstood and its victims mistreated for so long?
In a simple word… education.
Epilepsy is not a disease… it is a symptom of an underlying neurological disorder.
Epilepsy is not contagious… no one can get the disorder by talking to, kissing, or touching somebody with Epilepsy. Epilepsy is not caused by demons… occasionally there is an abnormal electrical discharge from a group of brain cells and the result is an epileptic seizure.
Epilepsy does not discriminate… virtually everyone can have seizures caused by brain injury, poisoning, head trauma or stroke and these factors are not restricted to any age group, sex or race.
So why should you care?
Because it can happen to you, your children, your spouse, your parents, your neighbor, your colleagues at work or a stranger who may need your help.
Your daughter falls while riding her bicycle on a Saturday afternoon causing a head injury that scars the brain tissue.
Your new born son has a trauma or high fever at birth.
Your best friend's husband comes back from the battlefield having survived an improvised explosive devise and experiences a generalized seizure six months later.
Your aging mother has a stroke causing an interruption of blood flow to the brain and partial seizures ensue.
Should any of these unfortunate events occur, who would you turn to?
Who would provide the guidance, clarity of information, direction as to medical treatment and pharmaceutical resources, and the understanding and compassion needed in a time of uncertainty and crisis?
Who would be your reliable epilepsy expert you can count on for patient services and family support?
The Epilepsy Foundation of Florida
101 Questions about Epilepsy
Read online here.
The Epilepsy Foundation of Florida (EFOF) leads the fight to stop seizures, find a cure and overcome challenges created by epilepsy. EFOF was established in 1971 as a not-for-profit 501(C) (3). EFOF is Florida’s sole licensee of the National Epilepsy Foundation,offering services to the estimated 375,000 Floridians with epilepsy/seizure disorders and their families.
Services include medical care, prevention and education, case management, psychological evaluations and counseling, support groups, children’s camps and family week-end retreats, and advocacy for persons with epilepsy.
Project Access is a national initiative funded by the Maternal and Child Health Bureau of the Health Resources Services Administration (HRSA) to improve access to coordinated,comprehensive care for children and youth with epilepsy in medically underserved and rural areas. State agencies, health care providers, schools, and other community organizations work together to increase awareness and connect families to available resources through community-based service systems.
EFOF is proud to be one of six grantees implementing this program throughout the nation.