First Ever “Talk About Epilepsy Weekend” Hopes to Spread Awareness, Raise Support

On September 7-9, the Epilepsy Foundation is partnering with TalkAboutIt.org to shed light on epilepsy – a neurological condition that afflicts more than 2 million Americans 0in the first annual “Talk About Epilepsy! Weekend.”

The event’s goal is to promote public understanding and awareness of epilepsy, a frequently stigmatized disorder. We spoke with Phil Gattone, President and CEO of the Epilepsy Foundation, to learn more about the condition and why it needs to be in the public eye.

1) What exactly is epilepsy? Who can be affected by it?

Epilepsy is a neurological disorder resulting in seizures – brief electrical disturbances in the brain that cause disruptions in consciousness. One in 26 Americans will be diagnosed with epilepsy at some point in their life. While most new diagnoses occur in the young and the old, anyone can be diagnosed with epilepsy at any stage in life.

Currently, 65 million people live with epilepsy, including 2.2 million Americans. More Americans are living with epilepsy than with autism, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.

One-third of people living with epilepsy experience seizures that cannot be controlled with today’s treatment options. And tragically, 50,000 people die from seizure-related causes each year.

2) Why is epilepsy not understood very well, and why does it carry a stigma that makes people uncomfortable?

Epilepsy is the oldest known medical condition. Hippocrates wrote about it 4,000 years ago. But, throughout history seizures have been associated with all kinds of unfortunate things, like evil spirits or witchcraft.

Today, of course, we know epilepsy is a medical condition, but people fear what they don’t entirely understand. Plus, a convulsive seizure can be frightening. The Epilepsy Foundation and ‘Talk About It!’ are working to educate people about epilepsy, and how to provide proper seizure first aid as a first line of defense.

The myths and misperceptions about epilepsy have been around for far too long. Too many people think the absolutely wrong thing about what to do if you see someone having a seizure. For example, you never put anything in a person’s mouth – never. Epilepsy is not contagious. It is not a mental disorder.

Through education and awareness, we hope to eventually end the stigma. TalkAboutIt.org was created by the actor Greg Grunberg, who, like me, has a son living with epilepsy. In fact, through ‘Talk About It!’ our goal is to promote public understanding and awareness by using celebrity star power. Having Hollywood behind us is, of course, a big help. We can’t thank Greg enough for all he is doing for our community.

3) What’s the best thing to do for someone you know with epilepsy?

Know what to do if you see someone having a seizure. Seizure first aid is pretty simple. It starts by not looking away. The goal is to keep the person safe until the seizure stops naturally by itself, which normally happens within a minute or two.

When providing seizure first aid for generalized tonic-clonic—that is, convulsive—seizures, some key things to remember are to keep calm, don’t try to hold the person down, and make sure the person is in a safe and as comfortable as possible environment.

4) What is hoped to be accomplished by the September Talk About Epilepsy weekend?

‘Talk About Epilepsy!’ Weekend is a great opportunity for volunteers to raise awareness about epilepsy, and also let people know about individual and supportive care services in their local communities. This is the first year of what we plan to become an annual national event. This first time, as a pilot, ’Talk About It!’ is partnering with Epilepsy Foundation affiliates in Boston, Chicago, Los Angeles, San Diego, Houston, Minnesota and Florida.

We have also teamed up with a great corporate partner, Lundbeck. Volunteers will be handing out epilepsy first aid awareness cards, encouraging participants in the weekend to talk about it—to friends, family, neighbors, teachers—anyone who might benefit from greater awareness. We also are hoping to raise money for epilepsy support services in those regions.

When everyone is better informed about epilepsy, people living with the condition will be able to “talk about” their condition openly, without fear or shame. All sons and daughters living with epilepsy deserve nothing less.

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