It seems like just yesterday we were in the dark about breast cancer, Parkinson's and prostate cancer. To say that tireless efforts led by strong, unified communities have increased public awareness is an understatement. To be able to say they've afforded hope to so many where there was once very little is a blessing. I'm writing today because it's time to shed that same illimitable light on epilepsy. Why? Because it's prevalent. Because it's devastating. Because it's close to my heart.
The numbers surrounding epilepsy are staggering. At any given time, nearly 1% of the world's population has active epilepsy -- that's 60 million people. Ten times that number will have at least one seizure in their lifetime. In the United States, it is a disease that is more common than autism, cerebral palsy, multiple sclerosis and Parkinson's disease combined. In the U.S., where over 3 million people are currently affected, the annual cost of epilepsy is $15 billion.
But even though the numbers themselves seem to indicate that epilepsy warrants as much attention as a host of other diseases that have gained recent prominence in the public eye, it doesn't. Again, I ask, why? Because epilepsy is a disease in the shadows. Patients are often reluctant to admit their condition -- even to close family, friends or co-workers -- because there's still a great deal of stigma and mystery surrounding the disease that plagued such historical figures as Julius Caesar, Edgar Allan Poe and Lewis Carroll. And when people affected by epilepsy are reluctant to expose their condition, the public remains in the dark about it - a tragic irony that has made patient care and raising funds for research more than challenging.
Earlier this week, I was invited by representatives from various organizations - the American Epilepsy Society (AES), The Epilepsy Foundation (EF), the Epilepsy Therapy Development Project, the International League Against Epilepsy (ILAE) and Citizens United for Research on Epilepsy (CURE) - to lead a brainstorming session on how to overcome some of the most daunting obstacles facing this cause. The resulting congregation included some of the most brilliant minds working in the field today, and it was an honor for me to collaborate with them on such an important issue. I was invited to participate for two reasons: my marketing expertise and the fact that my son Jonathan has epilepsy. The organizations' representatives were hoping that, through a technique we use in creating mission statements for our own companies, we could help bring the various missions of their organizations together into one cohesive statement.
How, we asked ourselves, do we enlighten the public about this complex set of diseases we call epilepsy? How do we remove the cloak of darkness and bring this important issue into the forefront of the consciousness of the scientific and medical communities, thereby paving the way for better patient care, compassion and scientific breakthroughs? Our process started out broad, with participants tossing out all manner of facts and figures about epilepsy - how often it affects those without a voice in our society (youth and the elderly); how prevalent it is in pregnancy; how important early diagnosis is to the long-term mental and psychological health of the patient; how surgery is available and can sometimes greatly lessen or eradicate the disease; and, most alarmingly, how epilepsy can be fatal and that anyone can get epilepsy at any time in their life. Steeped in statistics, and overwhelmed with facts, we pushed on.
Later, at the end of the day, we'd managed to focus the collective messaging on the most critical aspects surrounding the disease, distilling reams of paper into three short but powerful paragraphs. It is my hope that this initial work will be the first small step in creating a wide-reaching campaign, one similar in scope and effectiveness to those conducted by breast cancer and prostate cancer research. It is only by educating society on epilepsy that we will dispel the mystery surrounding it. Our hope is that when people realize how prevalent it is and how devastating it can be, especially when the proper medical attention is not sought, those individuals and families affected by the disease will be empowered to become active members of our team, spreading the word through education and awareness and thereby helping us raise those funds so critical to finding much-needed new therapies and cures.
Here is the result of our day's work; the vision statement that we hope will inspire you and others to take part in the fight to eradicate the disease:
Epilepsy hijacks the lives of one in one hundred Americans of all ages. It is an indiscriminate, unpredictable, misunderstood group of ever-changing diseases that manifests itself in seizures, brain damage, and cognitive and psychiatric disabilities.
Because epilepsy is a little understood and often stigmatized disease, many patients and their families are reluctant to acknowledge their condition publicly. This affects patient care, early diagnosis, medical research, advocacy, cures - and their very lives.
With recent advances in brain research, our time is now. The only thing standing between us and a cure is awareness and funding. It is time to come out of the shadows and join our cause.
Please join our cause to bring epilepsy out of the shadows. You can start by learning more through Citizens United for Research on Epilepsy (CURE) www.cureepilepsy.org.
Follow Lynda Resnick on Twitter: www.twitter.com/lyndaresnick
Thank you for this article. It is about 50 years late for me. When I was growing up in a fundamentalist church, my mother had--on two occasion--grand mal seizures. Elders of the church came and got my brother and I (he being about 2 years older than me), and promised us they would show us a "miracle." As it turned out, the brain trust of that particular fundamentalism, gathered around my mother. My brother and I were sitting in diametrically opposite corners of the room. The prayer that "God" would "heal" my mother ascended unto the Holy Source. And they also prayed for "the Devil" to be cast out of her. I was about 8-10. My mother continued to have seizures, and I can remember deliberately making sure I was not alone with her. Fortunately, after my "great apostacy" I mediated back to a mainstream protestantism. I am now a pastor in that church. The "evil" done unto so many people is inexcusable. But some of these same constructs are still dear to the fundamentalists.
Jerome Engel, Jr., M.D., Ph.D.
Director, UCLA Seizure Disorder Center
Past President, American Epilepsy Society and International League Against Epilepsy
Finally, a shameless 'self promotion' - In trying to process our family's experiences, I finally wrote about it- It was cathartic. Though personal,it helped me 'purge' some of my parental heartache...I encourage all who are inclined to find an outlet of free expression. -My article is found at: www.youandmemagazine.com/articles/epilepsy-a-good-morning
I thank Lynda Resnick for this article as welle as all who posted-- (amazing poetry!) I wish all seizure-free lives. Onward to a cure!
Best of luck to you and your children and all those who suffer from this terrible affliction.
Now there is a unique and creative term. Plagiarism or cliche you choose.
You know one sure fire way to turn people off from a campaign is saturate it with cliches, statistics and pleas for public awareness. My pity went up substantially when I realized the poor people suffering from this condition are relying on such horrid writing for attention.
The only possible explanation for such misplaced criticism is that neither you nor your family has been affected by epilepsy. Using an occasion meant for genuine humanitarian service as an opportunity for petty ankle biting shows a want of feeling, IMHO.
I guess the progression of epilepsy in my mind is a DISEASE....a seizure is a DISORDER if an isolated event in a normal brain. But the point is that once the process starts, from whatever etiology a particular patient may have, there are commonalities...with a range of symptoms that develop...this is the DISEASE part of it, in my opinion.
I also think that perhaps EF and others have tried to use the work DISORDER to minimize the issue in those that are afflicted so as to decrease stigma.
But heart DISEASE can be managed, and the public recognize that the treatment will largely rid the person of symptoms and allow them to return to normal life. Heart DISEASE onset and progression can be prevented, but we haven't really gotten to that point with epilepsy yet.
So seizures can be either part of a DISORDER (eg alcohol withdrawl seizures, febrile seizures) but the if a patient develops spontaneously recurrent seizures, ie epilepsy, they have been afflicted by the DISEASE. The DISEASE is the progressive cascade of changes in their brain, leading to more seizures, and in some cases cognitive and psychiatric problems. People can have a mild form of this DISEASE - ie well controlled seizures, normal IQ and normal functioning, but if they came of the meds they would have recurrent seizures, while other people can suffer a severe form, including drug resistant seizures, and progressive deterioration of their cognitive and psychatric health.
By the way, epilepsy is not a "progressive cascade of changes in their brain" and 70% of all seizure cases are caused by injury - like the soldiers returning for war. Most of us are INJURED, not DISEASED. Each case is different, and we are not defined by the few cases where seizures are part of more complex psychiatric problems.
Epilepsy is defined as having two or more seizures in a lifetime (not the cause). Since the seizure is a side effect of the brain short circuiting (which is sometimes the side effect of something else), the seizure - and therefore epilepsy - can't be a DISEASE by any definition. Of course epilepsy requires funding. It's horrible for millions of people. But we are not DISEASED.
I have to say that those three paragraphs are sloppy and uninformative - certainly the product of compromising between so many groups. The phrase "one in a hundred" historically connotes rarity. EF should have never decided to use it. I'm ashamed these groups would force the word DISEASE so many
I grew up with a sister that was not only developmentally delayed (she's 34, but functions as a 4 year old), but suffers from epilepsy. You cannot imagine the stress and strain my parents had to go through on a daily basis.
She started having seizures at the age of 8, I believe and upon the first Dr visit to figure out the problem, they put her on Tegretol and she's been on it ever since. The number of seizures she's had over the years, I can't even tell you.
My Mom passed away in '04 and my incredible Dad took care of my sister for two years before she went into a wonderful home. She still has the seizures and because the home is her guardian, they don't want to take any chances, so she has to wear a helmet. It's so sad and breaks my heart, but I totally understand, because at any time she can go into a seizure, fall down, and crack her skull or worse.
Epilepsy ABSOLUTELY needs more attention! Thanks again and I hope we see a change for the sake of millions of lives.
His left arm shakes and stretches hard
Toward the ceiling..and terminates
In a clinched fist,
As if he's an angry young college student
Protesting against the war.
His left leg hangs in the air
Jerking back and forth
As though he's trying to kick off a shoe.
His head is turned almost past his shoulder,
And his eyes are wide open and darting
Franticlly from side to side.
The air, forcing its' way through his constricted throat
Makes an eerie, primal sound
Like an animal in distress.
I hate these damn seizures,
But I always fear
That this one will be the last.
Then at last...the spasms relent
And his body sags
Like a limp, full size rag doll,
Heavily into his bed.
After he catches his breath
I will cover him with his quilted
Ernie from Sesame Street blanket
And another...made of red wool
Because the night is cool.
Then I'll stumble my way back to my own bed
And lie down next to my wife.
I sometimes hate these creative urges.
Half paralized with exhaustion
But still unable to sleep,
Thinking about some new poem I need to write
About one...of a thousand and one
Mundane daily tasks.
Like playing the part
Of a night duty nurse
For my dear, sweet, darling boy.
Yesterday my son looked up at me, stretched out his arm and rolled off the couch onto his face and was stone still. Checking for a breath or a pulse....dang, I'm glad we're on to another day and he's still here.
For that I am thankful!!
Thanks so much, I gotta fan ya for this!
Stay strong.
Soup for the Brain
http://www.insideoutgraphics2.com/id1.html
You hang in there, they're coming up with new things all tdhe time. Hopefully something like stem-cell research may hold some promise.
Like most bad things in life I find that writing about it helps me to deal with it. This poem is rather long so I'll have to write it in two parts.
Night Duty
Well...here I go again,
3 A.M.
And for the third time tonight
My son summons me to his room,
With a high pitched moanful wail
And the bouncing of his bed.
I try to hurry to his aid,
Stumbling through the darkened house
Like some sad old drunk
Coming out of the corner bar.
Half pretending to myself
That there's actually
Something I can do to help,
Beside just sitting here
On the edge of his bed
My left hand gently on his forehead,
My right...holding a small white-plastic
Urinal bottle...just in case.
Sometimes I think we need a support group! I rarely can leave my son home alone but
HAD to go out yesterday and came home twice with him seizing on the living room floor.
My heart goes out to you and all of us who have to witness our loved ones in that condition, he always says nothing happens to me, so I shouldn't be worried, but something does happen to those of us that care for them when they don't know what is going on. Fortunately he is functioning the day after, but he's very immature for a 24 year old.
Peace Out!
Judith Parker Harris
PSA Program Founding Chair