about epilepsyWhat is Epilepsy?

Epilepsy is a chronic neurologic disorder with many possible causes. Causes include illness to brain damage to abnormal brain development, however 60-70% of people with epilepsy have no known cause.

How common is Epilepsy?

According to the CDC, 1.2% of the United States population is known to have active Epilepsy. This is about 3.9 million people with epilepsy in the United States alone.

It is important to bear in mind that the incidence of epilepsy is estimated to be much higher around the world. In the US, 8.4 out of 1,000 people have reported they have active epilepsy. While the incidence of epilepsy in developing nations including those in Latin America and in several African countries, notably Liberia, Nigeria, and the United Republic of Tanzania, is reported to be closer to 57 out of 1000 people.

Let’s make these numbers a bit more relevant:

  • 3.9 million people with epilepsy in USA
  • 93.6 million people with epilepsy around the world (assuming US incidence %)
  • 655.2 million people with epilepsy around the world (assuming the Developing Nations incidence %)

According to a paper on the “Epidemiology of Global Epilepsy” published in Neurologic Clinics, Epilepsy affects more than 70 million people worldwide with approximately 90% of those suffering from epilepsy in developing regions. However, the WHO is still reflecting an outdated number of 50 million people.

What is a seizure?

A seizure is a sudden surge of electrical activity in the brain. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness.

Can kids get it?

Yes, kids can be diagnosed with epilepsy. About 470,000 children in the US under the age of 14 are living with epilepsy. Early recognition and diagnosis is key.

Can you die from epilepsy?

Yes, in fact many of these deaths are attributed to SUDEP or Sudden Unexpected Death in Epilepsy In SUDEP cases, no other cause of death is found and the person was otherwise healthy. Each year, about 1 in 1000 adults and 1 in 4500 children with epilepsy die from SUDEP.  Could be as many as 65-70,000 deaths each year. Learn more on SUDEP.

Recent research shows the better we can be at taking our medication on a regular basis in an effort to control our seizures the better chance we have to keep SUDEP at bay.

Is there more than one type of seizure?

It is estimated that there are more than 40 types of seizures. They are categorized a number of different ways but first and foremost seizures are lumped into two groups: Generalized and Partial. As you might expect, generalized seizures affect the whole brain at once, whereas partial seizures affect only a portion of the brain during the seizure.

Seizures do NOT all cause convulsions which makes epilepsy that much more difficult to diagnose, especially in children. In 2017, the ILAE spearheaded a new classification of seizures. This provides an update to physicians diagnosing seizure types.

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 one or more unprovoked seizures. A fever or head injury can provoke a seizure and not result in a diagnosis of epilepsy.

How do you know if you’ve had a seizure?

In my case, you know because suddenly you are on the floor when previously you were not. Oh, and you can’t explain how you got there. If you are concerned you may have had a seizure it is best to be seen by a neurologist who specializes in epilepsy.  These specialists are referred to as epileptologists. He or she will usually conduct a clinical exam. The doctor may then request an EEG and/or MRI as further evidence of their clinical findings.

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 t-shirt for Epilepsy Awareness Month, visit Living Well Gear Shop. Or maybe epilepsy buttons are more your style.

Does epilepsy have an awareness month?

November is Epilepsy Awareness Month. There are lots of activities to raise awareness from walks to ways to share your story.

Below you will find personal stories from people living with epilepsy

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