How to Help People with Epilepsy, a Condition that Affects 1 in 26

Most of the time, epilepsy is an invisible disability.  That is, until it strikes unexpectedly.  Epilepsy is a disease of the brain characterized by seizures, uncontrolled and involuntary spasms.  This condition lurks in more than 2 million children and adults in the U.S., 1 in 26 people.

November is National Epilepsy Awareness Month.  The Epilepsy Foundation has a twofold aim:

  • Raise awareness of epilepsy, that people with the condition have special needs and need the understanding of the public. At the same time, people with epilepsy can and do lead ordinary and extraordinary lives.
  • With this year’s theme of #AimForZero, educate people with epilepsy on the four steps to prevent sudden unexpected death from epilepsy, with its significantly higher mortality rate:
    → Taking medication as prescribed
    → Getting enough sleep
    → Limiting alcohol consumption
    → Striving to stop seizures.


It is important to distinguish between epilepsy and a seizure.  When someone has had more than one unexplained seizure (e.g., not due to head trauma), “the underlying and enduring tendency to have seizures,” that person is considered to have epilepsy.

According to the Centers for Disease Control and Prevention (CDC), there many types of seizures, ranging from a temporary state of confusion to a series of convulsions serious enough to cause the person to fall, shake, and become unaware of what is happening.  These many seizures, however, fall into two primary groups:

Generalized seizures.  These seizures affect both sides of the brain.  The two main subtypes are:
* Absence, or petit mal, seizures, which appear as rapid blinking or briefly staring into space.
* Tonic-clonic, or grand mal, seizures, which can cause a person to fall to the ground, go into convulsions, cry out, or lose consciousness.  (Tonic describes muscles that become stiff; clonic refers to periods of shaking of parts of the body.)

Focal seizures.  Also called partial seizures, these spasms are located in a single area of the brain.  The three main subtypes are:
* Simple focal seizures, which can lead to twitching or a change in one’s sense of taste or smell.
* Complex focal seizures, which are severe enough to cause a person become confused or dazed; he or she will be unable to answer questions for as long as several minutes.
* Secondary generalized seizures, in which the person first has a focal seizure followed by a generalized seizure.


Know What to Do
Although epilepsy affects 1 in 26 people, about 1 out of 10 people has had a seizure.  Therefore, it is very important to know what to do, especially in the case of a tonic-clonic seizure:
Keep calm.  Ease the person to the floor to prevent injury from a fall.

  • Place something soft and flat (e.g., a folded shirt or jacket) under the person’s head to avoid injury and keep it inclined. This also ensures that he or she won’t choke on saliva
  • Turn the person gently onto one side to help him or her breathe and further prevent choking.
  • Clear the surrounding area of anything hard or sharp to avert possible injury.
  • In a crowded space, ask any onlookers to leave the area.
  • Remove eyeglasses or sharp jewelry; loosen ties or anything around the neck.
  • Time the seizure. Call 911 if the seizure lasts longer than five minutes.


In addition to response, offering care and comfort is critical and applies to any type of seizure.

Follow these general steps:

  • Remain with the person until he or she is fully aware.
  • Help the person sit in a safe place. Briefly explain what happened.  Reassure the person and help everyone keep calm.
  • In a crowded place, ask any onlookers to leave the area.
  • Check for a medical-alert bracelet for important medical information.
  • Do not hold the person down; doing so could hurt you or the person. Likewise do not put anything in the person’s mouth.



People with Epilepsy Speak Up
To spread awareness of epilepsy, famous people with the condition have decided to “Talk About It!”

In our home state, New Jersey, Jessica Keenan Smith has created an advocacy group and website, Living Well with Epilepsy , to raise awareness of epilepsy and, through guest wrtiers, “what it means to have seizures.”  She is also promoting the Epilepsy Blog Relay for the month of March 2015, with the theme as “EPILEPSY AWARENESS: Maximizing Collaboration, Eliminating Stigma,” by having guest bloggers comment on four sub-themes:

  • Epilepsy in everyday life
  • Tech and innovation in epilepsy
  • Epilepsy and families: awareness matters
  • Creativity and epilepsy.

By becoming knowledgeable about both first aid and the condition itself, we can be true disability advocates.




Did You Know?

About 1 in 26 persons in the U.S. will develop epilepsy sometime in his or her lifetime, that is 2.2 million Americans and 50 million people worldwide.  That figure is greater than the number of people with autism, Parkinson’s disease, multiple sclerosis, and cerebral palsy combined.  Equally perplexing, 70 percent of cases of epilepsy have no know cause 70 percent of cases of epilepsy have no know cause.

Descriptions of epilepsy are as old as writing itself.  The ancient Greeks called epilepsy the Sacred Disease, in the belief that the condition was, on one hand, a form of spiritual possession and, on the other, a sign of genius and the divine.  The famous physician Hippocrates rejected this notion, citing heredity as the cause.

The terms grand mal and petit mal have been used for many years, even among physicians.  However, as they are French for “large evil” and “small evil,” they are becoming unpopular among people with epilepsy.


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