1 in 26

I did not want to let the month of November end without a blog post about epilepsy. November is National Epilepsy Awareness Month and I wanted to share with everyone a little bit about epilepsy, which is the 4th most common neurological disorder. It also happens to be my area of specialty within Pediatric Neurology and I spend lots of time thinking about how to help my patients with epilepsy.

Did you know that 1 in 26 people will be diagnosed with epilepsy during their lifetime and that 1 in 10 people will have a seizure? Right now you may be asking yourself what is epilepsy and even what is a seizure. A seizure is a transient, sudden surge of uncontrolled electrical activity in the brain. Seizures can look very different depending on what part of the brain is affected. Sometimes, a seizure can affect the whole brain at once, sometimes only a small area, and sometimes it can spread to the whole brain after it started in a small area. Epilepsy is the disease that involves recurrent unprovoked seizures, meaning seizures that were not caused by a sudden brain disturbance like trauma, changes in metabolites, severe infection, etc. The way I explain it to my patients is that when you have epilepsy it means that you have had at least one unprovoked seizure (typically at least two seizures that happened 24 hours apart or more but this is not necessary) and there is a high chance you will have more. Often that means that every day treatment is recommended.

The Epilepsy Foundation is a great resource for patients and the chapter in Easter Pennsylvania put out a great tool kit and I wanted to share that as well. Please find the full document on efepa.org. The facts they share are very important and I hope you will read through them to learn more about epilepsy and how it affects millions of people in the United States and throughout the world. The CDC reported in 2015 that there are 3.4 million people in the US living with active epilepsy. As I mentioned earlier, seizures can look different for different people, such as staring, , becoming confused, mumbling words, or collapsing to the ground. Seizures can last a few seconds or a few minutes. Unfortunately, 1/3 of patients will not respond to available treatments and will have uncontrolled seizures. Treatments can include medication, special diets, surgery, or special devices.

Myths

• You can swallow your tongue during a seizure! This is not true and you should never put something in the mouth of someone who is having a seizure since it can lead to choking.

• Epilepsy is contagious. False! You cannot “give” someone epilepsy.

• People with epilepsy can’t drive. Rules of driving vary by state but in Pennsylvania, a person with epilepsy can drive once they have been seizure free for 6 months.

So what can you do? Let’s start with language. People with epilepsy are just that! People. They are not epileptics and epilepsy does not define who they are. Seizures should not be called fits or be described as violent.

You can learn about epilepsy first aid and take a course. The key words to remember are STAY (with the person having a seizure), SAFE (move objects away and make sure person is safe and away from danger), and SIDE (turn person on their side, make them comfortable, put them on the floor if possible). If a seizure lasts more than 5 minutes, call 911. It is very important to time the seizure with your watch or phone to be accurate.

Finally, consider donating this Giving Tuesday (12/1/20) to the Epilepsy Foundation or any other organization that is working on advancing care for people with epilepsy. Feel free to message if you have any questions about seizures or epilepsy.

And don’t forget to wear purple!