Epilepsy Awareness Month: 30 Facts about Epilepsy

A reader of the Robert’s Sister Facebook page recently asked if she could share the epilepsy series I did a few years ago (30 Facts in 30 Days). (Of course I said yes!)

Bonus fact: First Aid for Seizures
(courtesy of the Epilepsy Foundation
of Greater Los Angeles)

A friend of hers had epilepsy and she wanted to spread awareness in support of her friend and even contacted a television station to ask if they would feature a story about epilepsy.

What a terrific friend!  This reader not only was there to support her friend with epilepsy but wanted to share information with the world in order to spread awareness and education about epilepsy. She didn’t have to spend extra time doing that but she did.

Many people with epilepsy lose their friends or feel overwhelming isolation – even ridicule. I believe that is changing as more people start to understand epilepsy and advocate for themselves and their friends.

The last I heard, the television station hadn’t responded to her but I greatly admire her efforts!

It has been a few years since I posted the facts about epilepsy so think this is a perfect opportunity to do so again. I have double-checked and updated the facts (adding new ones and removing others) from my previous posts and am posting them all at once.

Please feel free to share these facts in order to help spread epilepsy awareness. The more we talk about this disease, the more comfortable people will be hearing about it and the less isolated those with epilepsy will feel.

Here we go:

Fact 1:  Epilepsy is the 4th most common neurological problem behind migraine, Alzheimer’s disease and Stroke.  (www.epilepsy.com)

Fact 2: 3 million people living in the United States and 65 million worldwide have epilepsy.   (www.cureepilepsy.org)

Fact 3: Epilepsy is not contagious. (www.cdc.gov/epilepsy)

Fact 4:  Seizures can be as simple as what looks like a brief lapse in attention to muscle spasms or convulsions.  (www.cdc.gov/epilepsy)

Fact 5:  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  Yes, COMBINED! (www.cureepilepsy.org).  

Fact 6: It is a MYTH that a person can swallow their tongue during a seizure. THIS IS IMPOSSIBLE!  Also, nothing should be placed in a person’s mouth during a seizure. (www.epilepsy.com) 

Fact 7: Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, brain infections and many other factors. (www.epilepsy.com)

Fact 8: Famous people who have or had epilepsy:  Vincent Van Gogh, Bud Abbott (of Abbott & Costello), Danny Glover, Margaux Hemingway (granddaughter of Ernest); a Pope (Pius IX); royalty (Prince John); a former congressman (Tony Coelho) and musicians (Adam Horovitz of the Beastie Boys and Prince). Harriet Tubman, Socrates and Julius Caesar are thought to have had it as well.  (www.en.wikipedia.org)

Fact 9:  In 1990 Congress passed the Americans with Disabilities Act but according to the World Health Organization, as recently as the 70’s it was legal to deny people with seizures access to restaurants and theatres. There were even laws forbidding people with epilepsy to marry or become parents and some states allowed sterilization!  (http://www.who.int/mediacentre/factsheets/fs999/en and www.epilepsy.com)

Fact 10:  Most people with epilepsy live a full life but the mortality rate among people with epilepsy is approximately 2 to 3 times higher than the general population. Up to 50,000 deaths occur annually in the U.S. from SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, and other seizure-related causes.  (www.cureepilepsy.org and www.sudep.org)  

Fact 11:  Epilepsy surgery, medication (anti-epilepsy drugs or AEDs), Vagus nerve stimulation and dietary therapy are treatment options available for people living with epilepsy.  (www.epilepsy.com and www.epilepsy.org)

Fact 12:  Many people with poorly controlled epilepsy also have depression and feel isolated. Personal friendships help develop good self-esteem which reduces depression.  (www.epilpesy.com)

Fact 13:  Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  (www.epilepsy.com)

Fact 14:  In over one-third of people with epilepsy, seizures can’t be controlled with treatment which can lead to brain damage and death.  (www.epilepsy.com and http://www.ncbi.nlm.nih.gov/pubmed/14999166)

Fact 15:  Approximately three-fourths of people with epilepsy world-wide, living in lower to middle income countries do not get the treatment needed. (www.who.int/mediacentre/factsheets/fs999en) 

Fact 16:  Mood disorders are related to epilepsy and can be a side effect of either the seizures and/or the anti-seizure medication. (www.epilepsy.com)

Fact 17:  The word epilepsy is derived from the Greek word for attack and was one of the first brain disorders described (it was mentioned in Babylon more than 3,000 years ago). Hippocrates, in 400 B.C., was a forward thinker – when others thought those with epilepsy were “possessed” with this “sacred” disease, he suggested epilepsy was a disorder of the brain. (http://www.epilepsiemuseum.com)

Fact 18:  Seizure Response Dogs can assist a person with epilepsy by pushing a life-alert button, retrieve a phone for the person as well as comfort and protect the person during a seizure.  (https://www.pawswithacause.org)

Fact 19:  “Ten million people in Africa are affected by epilepsy, and 80 per cent of those are not treated with readily available modern drugs.”  Professor Ley Sander, Epilepsy Society’s medical director. (http://www.epilepsysociety.org.uk)

Fact 20:  1 in 26 people will develop epilepsy in their lifetime.  (www.epilepsy.com)

Fact 21:  Epilepsy research needs better funding.  The 2013 Estimated National Institutes of Health Research and Private per Patient Funding Statistics outline this need (www.cureepilepsy.org ): 

Epilepsy:  $74 per person

Alzheimer’s:   $189 per person;

Autism: $464 per person;

Parkinson’s:  $603 per person;

Fact 22:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a certain period of time, ranging from a couple of months to over a year, before they are able to obtain a license. Check the DMV in your state to get the specific rules.  Epilepsy Foundation also has a database with driver information by state. (https://www.epilepsy.com/driving-laws)

Fact 23:  A seizure can be described as an electrical storm in the brain. Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain. (www.epilepsy.com)

Fact 24:  In two-thirds of cases of epilepsy, no cause can be found. So many conditions can cause epilepsy or are related to epilepsy that it can be difficult to track down the exact cause. (www.cureepilepsy.org)

Fact 25:  Women living with epilepsy have unique issues to manage. Some antiepileptic drugs can interfere with the efficacy of oral contraceptives and have a greater risk associated with birth defects. Half of women with epilepsy report increased seizures around the time of their menstruation and it’s been found that menopause and perimenopause can cause changes in seizures as well.  (www.epilepsy.com)

Fact 26:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs. These changes can affect mood as well as reproductive function and fertility.  (www.efepa.org)

Fact 27:  Epilepsy results in direct and indirect costs of nearly $15.5 billion yearly. (www.cdc.gov/epilepsy)

Fact 28:  The strongest risk factor for SUDEP is having frequent, generalized tonic-clonic seizures. (www.chelseahutchisonfoundation.org)

Fact 29:  Seizures have three parts: a beginning (sometimes involving an aura), a middle (the “ictal”) and the end (postictal) which can involve confusion, sleepiness and memory loss. (www.epilepsy.com)   

Fact 30:  Inspiration and motivation to help sometimes comes from having a personal experience with epilepsy (and other conditions or diseases). Various organizations and resources are available and were formed after having a personal experience with epilepsy (many of whom are cited in this post):  CURE: Citizens United for Research in Epilepsy ; Talk About It Organization; Epilepsy Foundation;  International Bureau for Epilepsy;  International League Against Epilepsy; Chelsea Hutchison Foundation.  

Help spread the facts! Whether you post on Facebook, tweet a fact or two (or all 30) or talk about them you are helping spread education and awareness about epilepsy.

And THAT’S a fact!