Epilepsy in America: What Must Be Done

My daughter had another seizure last night. One moment she is standing there; a tall, gorgeous 23 year old with a bright smile and the next she is on the floor of a crowded concert hall. I had left her and her friend a minute before and when I returned she was having a seizure. What I saw brought a flood of emotions that still rocks my soul. One women was laying over her legs trying to control her, another was trying to shove something in her mouth and yelling that my daughter was going to swallow her tongue and yet another running around screaming on her cell phone for the paramedics. I was not polite in my actions or words. For in their ignorance they were doing more harm than good. All of this brings into play how utterly important and essential it is for the public to be educated when it comes to seizure disorders. Your April 20th issue brought mixed emotions for I was so terribly saddened by little Henry's death yet grateful and emcouraged that finally, finally it is being talked about. My gratitude to you for bringing this disorder to the forefront. And as a board member and executive committee member of our local Epilepsy Foundation, I urge the media, the medical community, family and friends of those with epilepsy and those struggling with it every day to keep up the momentum. Education of the proper way to assist during a seizure and eradicating the fear of the unknown when it comes to epilepsy is of the utmost importance. And maybe, just maybe we can make it easier for those who have to get up off the floor, dust themselves off and proudly continue on their way. Which is what I see my daughter do time and time again. She is a gorgeous, funny, tenacious tower of strength and, oh, how I love her. She is my utlimate hero.

Dear Mr. Meacham,
I spent the morning on my couch absorbed in your article partially frozen in shock. The pictures of Henry have been etched into my mind. His beautiful smile is contagious. My son Jack is 4 1/2. He was born with Down Syndrome and diagnosed with Epilepsy 8 months ago. I thought that his birth was the most difficult moment of my life but little did I know we had more in store. The past 8 months have been a living hell. People do not realize just how terrifying Epilepsy is. Both my mother and sister have Epilepsy but when it is your own child fear takes on a whole new meaning. I live day to day, always waiting for the bottome to drop. I have explained it to many as my body being on a constant state of alert. I pray every night for a cure. The medications seem to be working for the time being but I have been down this road before where they just one day are no longer effective. I cannot thank you enough for your article while at the same time extend my deepest sympathy for the loss of that little boy. I am a life long republican but now have a new found love for Senator Edward Kennedy. This would be money well spent.

Warmest Regards,
Beth Garcia
ejg3663@cox.net

Newsweek Magazine
The Editor's Desk

Dear Mr. Jon Meacham,
In your magazine, the week during April 20, 2009, NEWSWEEK you and your magazine wrote an excellent article that was entitled "THE MYSTERY OF EPILEPSY" Why We Must Find a Cure! The magazine information was helpful and great! You are correct we need to speak-out to our public about the education and acceptance of this condition, living with Epilepsy!
I have lived with EPILEPSY, well over 50 years, with 10 different Neurologists. I have helped EDUCATE people about my EPILEPSY. I speak-out about this condition on many different occasions! I also speak out about the up-dated FIRST AID, and explain how the newer techniques are for the better safety of the Epilepsy patient!
I had my brain operation; back in (December 1994) where they removed 80 to 90% of my Right Temporal Lobe, all of My Right hippocampus. I still act and look very Normal, If you ever want a patient, living with Epilepsy for over 50 years to offer what it is like living with Epilepsy from personal experiences I would be glad to speak to you, or one of your reporters!
We need to educate our society about this condition called Living with Epilepsy. I as a patient that lives with Epilepsy would like to help REACH OUT and help you with your magazine NEWSWEEK with our United States Population at any time you feel it would help!
Thank you for your time, patience in reading my email, and hope that I can help REACH OUT to help educate our public, if you are willing to approach me?
Back in the late 1980's I was selling used cars; until the owner of this dealership called me into his office with his lawyer and insurance agent, and said "I was a threat to his business as being a liability to his business because of my Epileptic seizures and therefore would have to fire me from his company."
He also said "look you need to research the information on Epilepsy and go out and educate the public on this condition and some day you???ll know more than most Neurologists, since you live with the condition called Epilepsy!???
Thank you for your time and patience in reading my email and hope that I can be of some help REACHING OUT to help educate our public, if you are willing to approach me.
My Blessings,
Bob Raymond (bobray@cox.net)

Finding a cure for epilepsy has been a crusade for me after losing my grandson April 5, 2009. Alex never had a seizure in his life until the morning of Jan 13, 2009 and he never woke up (remained in a pentobarb coma and was diagnosed status epilepitcus). The pain is still so unbearable. He was the greatest, kindest child and yes, you can't believe this has happened to you. Something has to happen to find a treatment that works without destroying their smaill bodies with the AED's. Alex was only 7 years old and never sick before this happened. Please feel free to visit his website on caringbridge.org "alexanderclark" if you would like to read his story. So many times we had hope but treatment failed over and over again. My email is diana.clark707@gmail.com.

Dear Mr. Meacham,
Few can guess my shock when I received the April 20th issue of Newsweek in my mailbox. I actually stood still before slowly closing the box and walking home. I read and reread that issue so many times. I cannot discuss it of course as I have epilsepsy or sizure disorderss or whatever someone ellse calls it today. Thank you and the contributors for opening the door and turning on the light to reveal that we are not possessed or backwards- just wired a little differently. My journey with epilepsy begain after being hit by a drunk driver. This was during the 60's when safety belts and glas were not standard features in cars. My parents were overjoyed that I had not died. Several years later the symptoms began to appear, but no doctor tested for it - just growing pains. Only when I was 19 and nearly died from a seizure at college did someone run some tests althugh originally it was thought I was on drugs so I was treated for drug withdrawal rather than epilepsy.
The only time I saw my father cry was when the doctors told my parents that the best thing to do was to take me home and make arrangements. i would never be able to have children, drive a car or graduate from college.
During those first years , I did need help as doctors tried one drug after another. I did remain in college although I did have siezures in class- not the mild ones either. My teachers were amazingly considerate.
Today, I am married and the parent of three grown children. I hld a MSC with distiction and serve as a program evaluator. i also operate my own writing business. I was an educator for more than 20 years until I had seizure at work and my principal decided that I was no longer emploable. Yes, I did file a federal complaint that took 5 years to have a judge say that I had a case but that I should settle for $75,000 - the sum I paid the lawyers.
Your article served more people than you will ever know. I only wish my firend Meredith Anaforian wss still alive to read it. She was a budding journalist who died after a seizure when she was just 20 years of age. I did visit her grave and read her your editorial.
Thank you for biving me a place in this world.
Sinclerely,
E. Richards

I have dealt with seizures (gran-mal and complex partial) since they started when I was 18 at UGA in Athens, GA. I am under good control now and on Depakote ER.
Epilepsy is from the GREEK, by the way, not Latin!
Dale Howard, Atlanta, GA

Thanks for a good story. We need people to bring Epilepsy out to the pubilc more so people will know more about us, and what to do and also NOT to be scared of us too. All You hear about on TV or anywhere are the other Diseases like Cancer, Diabetes, and other stuff. But what about all of us who have Epilepsy ?? Don't forget us either . I'm 42 yrs old, and have had it since 9 and still not under control, but slowly getting there. Good Luck to all of you out there and God Bless You All.

Congratulations on a well-documented, researched and written cover story on epilepsy, your April 20 cover story.

One area not touched upon in depth is adequate health insurance.

"Companies can refuse to underwrite insurance policies for people with epilepsy." This statement comes right from the National Epilepsy Foundation's Web site on the page in which it describes how difficult it is for people with epilepsy to obtain adequate health insurance. (http://www.epilepsyfoundation.org/living/wellness/insurance/health.cfm)

My son - nearly age 25 now - has been struggling with epilepsy for nine years now. He could not drive for many years; he now can. He struggled to make it out of high school because seizures began just as he was finishing his sophomore year. He has various battles with memory, sleep, stress, lethargy and anxiety problems because, no doubt, of a mix of the condition and the heavy duty drugs takes to control it.

Despite all that, he earned his undergraduate degree, started driving, did some work toward his master's degree and even visited China for a month. He did all of this because he had adequate care and the right drugs, which are very expensive. Luckily, he has been seizure free for several years with his regimen.

Now, as he nears the time he will have to leave my insurance plan, he is faced with the possibility of having no insurance and facing a monthly prescription bill of $1,400 or more. (Sure, COBRA is available - at a cost of more than $500 a month). If he doesn't take the meds, he is likely to have seizures, leading to the possibilities of a loss of drivers' license, loss of a job, loss of independence, injuries or even worse.

Congratulations on a well-documented, researched and written cover story on epilepsy, your April 20 cover story.

One area not touched upon in depth is adequate health insurance.

"Companies can refuse to underwrite insurance policies for people with epilepsy." This statement comes right from the National Epilepsy Foundation's Web site on the page in which it describes how difficult it is for people with epilepsy to obtain adequate health insurance. (http://www.epilepsyfoundation.org/living/wellness/insurance/health.cfm)

My son - nearly age 25 now - has been struggling with epilepsy for nine years now. He could not drive for many years; he now can. He struggled to make it out of high school because seizures began just as he was finishing his sophomore year. He has various battles with memory, sleep, stress, lethargy and anxiety problems because, no doubt, of a mix of the condition and the heavy duty drugs takes to control it.

Despite all that, he earned his undergraduate degree, started driving, did some work toward his master's degree and even visited China for a month. He did all of this because he had adequate care and the right drugs, which are very expensive. Luckily, he has been seizure free for several years with his regimen.

Now, as he nears the time he will have to leave my insurance plan, he is faced with the possibility of having no insurance and facing a monthly prescription bill of $1,400 or more. (Sure, COBRA is available - at a cost of more than $500 a month). If he doesn't take the meds, he is likely to have seizures, leading to the possibilities of a loss of drivers' license, loss of a job, loss of independence, injuries or even worse.

To the author of this article, I commend you for taking the time to explain to others what epilepsy's silent, hidden painfull force is like. I say this because I am a victim of Epilepsy, it started when I was 9 years old and the cause was due to a high feever during my childhood. I've been on medications all my life and have to credit the seizures (as odd as it might sound) for helping craft the personality that I have today and for being the person I am.
It helped me understand and feel the pain of others, regarless of what they are going through, it also helped me have more control over my mind and thoughts. Mind you this came at a price I am 39 today and thankfull have been seizure free for 3 months due to the kind actions of a Tampabay Fl physician who convinced me to perform a surgery (since my seizures were isolated to one area of the brain, as he found out), this was the best deicision I made in my life, I now know what I have been missing out of life, it is like being born again.
Today I am seeking a job in this though economy since my prior employer, terminated my employment of 8 years, after I made a formal complaint to HR to make them aware that my direct supervisor was inflicting pain on me by triggering my seizures after knowing what causes them, this was done by treating me differently from other employees and by forging reports to show I was not doing my job (even though I proved I was). Other employees who informed HR about my managers actions and let them know they are doing this in purpose (triggering the seizures) were penalized too, not fired though. HR director refused ot call my doctor to get information and all medical information submitted to the company regrading my disability was suddenly lost from my file. When I filed a complaint with the EEOC (three times) the company wrote me up and terminated my employment. I am sharing this with others, to make sure you are aware of what some companiess will do to individuals who have epilepsy, THe CEO saw me as a threat that might increase the company's isurance policy. All I ask of the world in return is to listen to our experiences and help make sure we are all treated equally in this diverse world, maybe listen to what some of us go through and how we had to beg HR to give us relief after going through a seizure, yet this courtesy was refued and greeted with a termination slip. Today I choose to seek justice to make sure that others do not experience what I did. Best of luck to all.

Thank you for your compassion and making the effort to bring a much misunderstood disease out of the shadows.

My heart goes out to you and your family ~ My daughter was diagnoised two years ago after suffering for years pior to that ~ We have come a long way from the days of 18 seizures and no one doing anything to help us ~ Thank you for sharing your story with such a heavy heart , as well as hopfully educatig thoes that dont know what life is like for a parent or most so the life of a patient ~ I pray your efforts dont fall on deft ears rather open eyes to the condition ~

Despite the Axelrod's heroic efforts, Jerry Adler and Eliza Gray's anticle is a giant step backward for many children with epilepsy.

Because of Adler and Gray's sloppy misrepresentation of the
ketogenic diet as a therapy for children with difficult to control
seizures, thousands of kids who could start getting better tomorrow,
will continue to suffer from epilepsy, drugs and surgery.

Because of Adler and Gray's misinformation and non-information about
dietary therapy, many children who don't have to have seizures at all
will die from them.

Today, the ketogenic diet is an early therapy for many of these
children at the Mayo Clinic, Johns Hopkins, Massachusetts General
Hospital, and dozens of other hospitals around the world, with
astounding success. (please visit <charliefoundation.org>)
Thank God we, and thousands like us, found the ketogenic diet for our
child, who went from as many as one hundred daily seizures, drug
cocktails, and failed brain surgery to a happy drug and seizure free
life before coming across Adler and Gray''s irresponsible and unforgivable
journalism.
Jim Abrahams
Director
The Charlie Foundation To Help Cure Pediatric Epilepsy

My uncle Billie, who was an epileptic, died as a young man, in the 1950s, when I was a kid. Thankfully, I never experienced one of this grand mal seizures; the thought terrified me. The drugs he took controlled, but didn???t eliminate his symptoms, and he was let go by a leading aircraft manufacturer where he was a senior draftsman because of them. Though his entire life was affected by epilepsy, it was never diminished. He made model planes, not from kits but from sheets of balsa and paper, to exact specifications, and then flew them in combat competitions. His joy, when bested, was as great as when he won, which was often. He had the happiest laugh I ever heard. He played several musical instruments expertly. He was an outdoorsman of prodigious skill: he once called in a murder of crows and cawed the fat with them as they perched in the trees around us. He died while hunting. His parents refused an autopsy because of their shame.

THANK YOU for bringing epilepsy awareness to a national level. Many of us who have suffered from seizures (and their long term effects) are tired of public misconceptions and the stigma still associated with the disease. It???s about time epilepsy is recognized as the serious medical problem it is. Furthermore, medical research addressing epilepsy has been underfunded for far too long. We need change. I hope this is only the first of many discussions acknowledging a disease which affects the lives of so many.

K.Rosser

Expanding on the previous comment, i ended up getting a VNS device,and that has done wonders for me. Never mind if a procedure does not work for everyone. Find out what does and deal with it. If someone needs evasive surgery then he should have it. The procedure should be done so that it is affordable,so those who need it the most can get it.

The article painted so bad a picture that more people will be scared and will not know what to do. In fact I see this as possibly affecting travel. I have traveled by bus,train, and plane. At no time did I ever have a siezure. So what happens when I show that I have the device and I get questioned? Could this happen? Perhaps. We need to further educate people so that they do not see everyone with Epilepsy as going to have a siezure on them.

Other countries need to also get a better understanding also. As it stands now, at least some of them refer to Epilepsy as a serious "Mental Condition", and are reluctant to allow people with the desease to stay in there country for any great lengh of time.

So this comes out to be a very bad form of discrimination,brought about by ignorance. So if that is not wanted, then someone should be writing about how many are in fact able to function well on a day to day basis.

In one sense I applaud this article on Epilesy. Like cancer it does need to have a cure. But like all cancers (some of which are often the result of our life syle),we need to have the right treatments in place for each case. As the article states that many of the treatments now do not offer the kind of success that they should. This is very true. I have had Epilepsy myself for most of my life. At two I was diagnosed with "idiophathic" Epilepsy. For those who do not know,it means that they do not know.
At four, I had my last siezure (or so they thought), "HURRAH" then at 23 it came back. I had many treatments over the years,with that I had an average of two or three Siezures(Tonic Clonic) a year. And I am not sure how many Absence Siezures in a year. In spite of that I was able to live a normal life and could think and function as normally as one could on all kinds of pills. I was also able to go to Boston for my doctor visits without any problems, I graduated High School as a "B" "C" student, and I held serveral jobs over the years. At no time was there any hint of a problem that would cause me any serious(or anyone else) problems,yes I did have a few seizures at work,but not very often. Could I have died,most likely. But I did not,that is what is important,but at the same time you need to always be aware of the possibility. I just do not worry about it,as my dad would say"I could be hit by a beer(him)truck someday".And he does not have Epilepsy.

Through the years I have been to many places by bus or flown on planes,both domestically and overseas. I have been to the Philippines many times and have never had any problems. Alright this is me, now we need to first isolate how bad ones condition is and taylor the treatment to that person. Some may need invasive surgery, or for someone like me,the VNS device works fine. I have gone from 2-3 a yr to one a year on the average. And I had a very quik recovery on the one that I had. So it does not work well? Well I would argue that point. It all depends on the case.

So what do we do? We need to figuire this out because it can affect travel and retirement. If someone wants to retire out of the country,they should be able to without having people worrying about how we are going to survive. We need to be able to have that option without dealing with people trying to second guess what you and your doctor have decided on. And I can not stress enough, isolate the severity of the condition and treat it accordingly. I do not see that covered that well in this article.

Why doesn't the media discuss the alternative strategy to end the Somali piracy of totally destroying Somali towns that provide refuge to pirates and the captured ships? This could be down by naval bombardment, B52 carpet bombing, or single monster bombs parachuted out the back of large cargo planes. Destroying one or two such towns would change the local political support of piracy. No town would want to harbor pirates if it were at risk of being obliterated. The U.S. need not put ground troops at risk. Strategic use of air power would be very persuasive.

Jon,

Thank you for putting your well researched and compelling story on the cover of Newsweek. As the best minds in the world- like Dr. Orrin Devinsky- work to unravel the mystery and hopefully find a Cure for epilepsy- the 3 million Americans and 50 million people worldwide who suffer from this condition live their lives with a public that often does not know how to act or react.

My best friend Anita Kaufmann had adult onset epilepsy-and died six years ago from complications of a seizure. She often said that the stigma was worse than the condition itself. In her will, she asked me to create a Foundation in her name solely committed
to educating the public not to fear epilepsy.

Please let your audience know that your call for action is being heard and that the Anita Kaufmann Foundation- a public charity - offers a groundbreaking free 5th grade program educating the next generation on how to recognize and respond to seizures promoting tolerance and inclusion, which is a lifesaver when it comes to living everyday with epilepsy.

Deborah Josephs- executive director- The Anita Kaufmann Foundation (www.akfus.org)