"Thank you for the work you are doing in analyzing epilepsy research. Thank you also for allowing me to discuss the current state and future impact of epilepsy on our society.
By way of introduction I am a board member of The Epilepsy Therapy Project and the father of a son who has had epilepsy for 18 years.
The two goals of The Epilepsy Therapy Project are:
You will hear all of the devastating facts about epilepsy from other speakers: largest neurological disorder, impacts 1% of our population, 1/3rd of whom have no relief from seizures, 2/3rd of whom suffer devastating, life-impairing side effects of epilepsy, and I could go on.
There are no good diseases, and all of us who are in this fight to improve the lives of those living with epilepsy acknowledge that you are in the difficult position of addressing all diseases with limited funding resources.
What I would like to do is to provide a perspective on funding, or lack thereof, of research to date, and give you some insight into one aspect of epilepsy that will only get worse in the near term because of the conflicts our soldiers are facing today.
18 years ago when my wife and I were informed that our then 17 year old son had a grand mal seizure, our first question was “What is a grand mal seizure?” In short order we learned more about epilepsy than we ever envisioned. This disease has been around as long as we have been on earth. It is mentioned in the Old Testament as a demonic possession. Yet the advancements of treatment have been miserable. In terms of funding and improvements of the lives of those living with epilepsy, we have failed.
Now, I will admit that this is difficult, as any brain disease is difficult. But, frankly, after my wife and I dug into the current state of epilepsy research and advancements in treatments 18 years ago, we were both amazed and appalled at how little had been accomplished.
So my plea to you today is, do not hide behind the mask of saying that this is hard or there is no good research. We need to increase funding for epilepsy research today so that in some tomorrow those parents who find themselves in the position my wife and I found ourselves, will not be as devastated as we were. More importantly, those people who have epilepsy will have better drugs, devices and other prospective therapies, perhaps not yet imagined.
Our son developed epilepsy because of a trauma to his head. He was playing in a high school basketball game and went up for what should have been an uncontested layup. He was however, fouled aggressively and in a fluke the first part of his body to hit the floor was his head. This shook his brain, and caused an injury to his brain.
Today he takes daily medication to prevent seizures and lives with the debilitating side effects of those drugs. All seizure medicine is caustic. The body attempts to reject these caustic drugs and these patients require increased dosages to prevent seizures.
Side effects are significant for all epilepsy patients and include diminished brain capacity, depression, significant weight changes and a variety of physical impairments, just to name a few.
My son went to college not far from here at Georgetown. The route from his dorm to the cafeteria at one point included a walk down a 2-story steel and cement stairway. He once had a seizure after making it down the stairway and taking two steps on to a lawn. What if he had had that seizure ten seconds prior? What if he had had that seizure at the top of that stairway? This is the fear that every one of the 3 million people in this country living with epilepsy lives with on a daily basis. Epilepsy effects more people than autism, cerebral palsy, multiple sclerosis and Parkinson’s combined.
On Memorial Day this year you perhaps heard Colin Powell note that 400,000 of our veterans returning from Iraq and Afghanistan have traumatic brain injuries – not to mention those on other fronts who suffer TBI. These are injuries identical to the one my son experienced 18 years ago. While we thankfully are experiencing fewer deaths in our armed forces today, we are seeing dramatic increases in brain trauma. Most of these soldiers will develop epilepsy – there is a 29 fold increase in developing epilepsy if one has TBI.
This is a certainty, not a maybe. We must adequately fund epilepsy research today so that we can provide effective therapies to those soldiers tomorrow. Our young men and women in the military have put their lives on the line for our freedom and the freedom of those people in the countries where they serve. We need to be a country and a people who do not let those who have experienced head trauma end up with a hellish life. It will be hard, there are no promising, easy answers. But do you want to have those soldiers live their lives thinking their country did not think enough of their sacrifice to improve the drugs and devices available for them? Epilepsy takes freedom from those who suffer from it. We cannot allow our citizens who have fought for freedom to lose their own freedom.
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