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Epilepsy Truths and Myths: Education is the most powerful weapon

Medical Director of the Northeast Regional Epilepsy Group and author of What You Need to Know if Epilepsy Has Touched Your Life: A Guide in Plain English, Dr. Marcelo Lancman sat with us to talk about a very important topic in epilepsy: Myths and Truths about epilepsy. Epilepsy has a very long history.  Modern medicine has only recently developed the tools to properly diagnose epilepsy and to differentiate epileptic and non-epileptic seizures.  Ignorance and misunderstandings about epilepsy however have been around for thousands of years.  Epilepsy education is a topic that Dr. Lancman feels very strongly about in that this is the way to combat ignorance and stigma. 

Dr. Marcelo Lancman, Medical Director of the Northeast Regional Epilepsy Group in New York, New Jersey and Connecticut sat down with us to discuss epilepsy myths and truths.  Dr. Lancman is Board Certified in the American Board of Psychiatry and Neurology and in the American Board of Clinical Neurophysiology.  He hails originally from Buenos Aires, Argentina where he earned his doctorate degree.  He completed two fellowships in epilepsy; the first in Wake Forest University and the second at Cleveland Clinic Foundation.  Over nearly twenty years, he has published extensively in peer-reviewed journals on multiple facets of epilepsy and is often sought out for second and third opinions for difficult to treat epilepsies.  Recently, he published a very positively reviewed book for patients and loved ones: What You Need to Know if Epilepsy Has Touched Your Life: A Guide in Plain English. The Spanish version of this same book was just published in November (Qué Necesitas Saber si la Epilepsia ha Tocado Tu Vida). Throughout the article, you will find links to related topics that have been included for you to be able to continue reading up on safety devices and such.

Epilepsy has a very long history.  Modern medicine has only recently developed the tools to properly diagnose epilepsy and to differentiate epileptic and non-epileptic seizures.  A much better characterization of different epilepsy syndromes and potential sources of epilepsy (tumors, tubers, strokes, genetics, etc.) are also relatively new and progressing at light speed now, but this was not the case for thousands of years.

Before we even begin with the interview, let's define what "a myth" is.

It is a widely held but false belief or idea that often tried to explain some natural or social occurrence through supernatural or God-like interpretations.  Myth-like creatures include unicorns and elves.  Divine explanations about natural events such as floods or thunder used to be common.  Illnesses and other physical problems were also explained from religious perspectives or through some rough understanding of the human body.  Many myths about epilepsy developed over the years and unfortunately, many of these have persistently stayed around into present times.  

Where do these myths come from?

Ancient societies tended to try to understand illnesses, behaviors, events of all kinds with the theories they had at hand.  Often this involves theories about Gods or divine punishments or gifts.  Medicine was primitive and the health providers would try to explain or cure with unproven methods or “medicines.” This is why it is so important to disseminate accurate information about epilepsy every chance we get now.

Could you tell us about some of the most persistent myths and what the real facts are?

Myth: Epilepsy is contagious.  

Witnessing someone frothing at the mouth still produces fear in many and some persons fear being contaminated if they touch the saliva or the person who is seizing.  There have been reports coming out of Africa in which this is still held as a belief and persons who are seizing are avoided. 

Fact: It is absolutely NOT contagious.

Myth: You must put something in the mouth of someone who is seizing so that they will not swallow their tongue.

Many teeth have been broken and even fingers have been lost because of this myth.  There is even the real danger of choking if that which is forced into the mouth of the person having the seizure breaks off.

Fact: There is absolutely NO need to put anything in the mouth when someone is seizing.  

Myth: Someone who is having a seizure should be restrained or pressed to the floor.

There is absolutely NO need to restrain someone having a seizure.  

Fact: In fact, if you press down on the chest during the seizure, you might limit the air that can come into the lungs and you could cause death or injury. DO make sure the person is safe and away from harmful objects and try to make sure there is something soft under her/his head and is rolled onto her/his side.  

Myth: You can’t die from epilepsy

Unfortunately this is NOT true.  SUDEP (Sudden Unexpected Death from Epilepsy) is a very real concern. Having a very prolonged seizure (status epilepticus) can lead to death.  Scientists estimate that thousands die as a result of SUDEP every year in the US.  Doctors recommend that safety measures include: taking your anti-epileptic medications very regularly, sleeping enough time every night, avoiding alcohol and drugs.  Some parents choose to have a baby monitor to be able to hear if their child is having a seizure.  There are also mattress pads that pick up movements and sound an alarm, oxygen monitors and pillows to avoid suffocation.  

To read more about SUDEP:

To read more about some safety devices on the market (these reviews are provided solely for educational purposes-the Northeast Regional Epilepsy Group has no relationship with these products): 

Wrist monitor

Sleep Safe Pillow

Wrist Monitor

Medication Reminder alarm

Oxygen monitor

Mattress pad (at the bottom of the article)

Myth: Very few people have epilepsy and I don’t need to worry about it.

Not true. One out of every 26 people in the US have epilepsy.  More people have epilepsy than with autism, Parkinson’s, multiple sclerosis and cerebral palsy ---combined!

Myth: Modern science has produced so many new medications that epilepsy is now a solved problem.

Unfortunately, this is NOT true.  There are a significant number of patients who do not respond to the medications and continue to have seizures.  Science is working hard to develop newer and better medications, surgeries, and other treatments but we’re not quite there yet.

Myth: only kids get epilepsy

You can develop epilepsy at any age. In fact, a growing number of new epilepsy cases are found in the elderly population (often as a result of another medical problem: stroke, heart condition).

Myth: People with epilepsy are disabled.

This is NOT true.  Many people with epilepsy are quite able to do very well in their academic careers, work, and life.  Just to name a few very visible and successful people living with epilepsy: Supreme Court Judge: John Roberts, musician Neil Young, author Agatha Christie, President Theodore Roosevelt, etc.  

What do you suggest to combat these myths?

The only way to have these myths disappear is to educate patients, their loved ones and the general public.  Educational campaigns are essential to continue spreading correct information to all who will hear it.  At the Northeast Regional Epilepsy Group we run annual educational initiatives through conferences, webinars, on-line postings and blogs, and more recently these two books on epilepsy that I published with some of my colleagues.  All of these efforts are meant to persistently educate the public with the goal of dispelling these myths and teaching accurate information once and for all.  


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