When people first find out that I have epilepsy, they often reply, “Wow, you would never know.” This is true of course, unless I’m having a seizure. Which makes me think about all the places where I’ve woken up after a seizure: in the street (literally), in a conference room at work (that was delightful), and the list goes on and on. To make matters worse, my seizures are the big ugly convulsions that you see in movies.
November is Epilepsy Awareness Month, and you may be surprised to learn that more than 3 Million Americans and 70 Million children and adults worldwide are living with epilepsy. That’s more people than were living with HIV/AIDS in 2008. You should also know that epilepsy is as prevalent and as deadly as breast cancer; yet epilepsy receives 1/5 the federal funding for research when compared to breast cancer.
So, in honor of Epilepsy Awareness Month and the 70 Million of us out there, here is a primer to help answer a few FAQs:
What is Epilepsy?
Epilepsy is a chronic neurologic disorder with many possible causes. Causes include illness to brain damage to abnormal brain development, however 70% of people with epilepsy have no known cause. A little research money would go a long way toward reducing that 70%.
What is a seizure?
A seizure is a sudden surge of electrical activity in the brain for a short time, similar to just before a light bulb blows out. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness.
Yes, more than 200,000 new cases are diagnosed in the US each year and more than 20% are children under the age of 15. That’s more than 40,000 kids newly diagnosed each year–enough to fill Michie Stadium at West Point.
Can you die from epilepsy?
Yes, in fact each year more than 45,000 people die from seizure related deaths. Some of these deaths are caused by SUDEP (Sudden Death in Epilepsy).
Is there more than one type of seizure?
Yep, it is estimated that there are more than 40 types of seizures. They do not all cause convulsions which makes epilepsy that much more difficult to diagnose, especially in children.
Does everyone who has a seizure have epilepsy?
Having a seizure does not necessarily mean that a person has epilepsy. Epilepsy is diagnosed when a person has recurring uncontrolled seizures.
How do you know if you’ve had a seizure?
What do you do if someone is having a seizure?
No compressions–they are not having a heart attack, and please don’t put any dirty old wallets (or anything else for that matter) in the person’s mouth. Just try to remember the 4 C’s of seizure first aid: stay Calm, Clear the area, Comfort the person, and Call 911.
Does epilepsy have a ribbon or a color?
Yes, the color for epilepsy awareness is purple. To get your own epilepsy awareness gear for Epilepsy Awareness Month, visit at Living Well Gear Shop.
So this November, watch for epilepsy awareness events in your area. And ask around, you might be surprised at how many people you know have epilepsy. If you are interested in more information, visit LivingWellWithEpilepsy.com.
The statistics cited here are available via the Epilepsy Foundation of America and UNAID, WHO, NINDS and Komen Foundation.
Jessica Keenan Smith is founder of Living Well With Epilepsy. She is a writer, a blogger, and an expert in niche marketing. She has lived with epilepsy for more than 25 years and her site Living Well has become resource to the more than 70 million people worldwide affected by epilepsy. Her writing can be found at livingwellwithepilepsy.com, Feministing.com, Disaboom.com and other news outlets. Her original epilepsy awareness designs can be found at Living Well Gear Shop. To connect across social media you can find her on @jessicaksmith, Facebook.com, and LinkedIn.com. Reach out, she will be happy to connect!