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.
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