Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Sunday, June 3, 2012

SUDEP=50,000 Americans, Broken Hearted Families Worldwide

50,000 Americans die every year from SUDEP. That's right, read that number again. SUDEP is sudden unexplained death in epilepsy. To put it into proper perspective, that would be one hundred fifty plus plane crashes per year of a modern jetliner, such as a Boeing 767 or Airbus A330. In another way, that would be almost a plane going down every single day, and now you have a better understanding, of the total of folks who've lost their lives to this condition. Now multiply that pain, not only a young person or vibrant individual loved by so many, gone before its their time, and all of the cracks of pain inflicted upon families, friends, neighbors, school teachers, and members of communities across the "fruited plains". Thats a lot of tears, a plethora of dreams crushed, and people who have been robbed of their life or that person, whom they love so very much.

When Tommy passed away from this, I felt as if I was alone. Often I still do. It is a lonely road, even with an amazing family that has been very supportive, that I would not recommend walking down upon. It will have you question everything that you have held sacred, and throw that into millions of directions, just like an actual plane crash can heave engine parts miles away from debris. There's no picking up the pieces, there's no answers, although broken wings do heal with time, even as pain upon your heart continues to be with you every single day. So these 50,000 lives every year, there are parents, families, siblings, friends, and so many more that are impacted. Yet only 1/2 of 1% of U.S. medical research goes to epilepsy, even thought it affects way over three million of our fellow citizens. One in ten of us are going to have a seizure in our lifetime, so don't think you can simply just "avoid the invariable lightning bolt, because it is headed in your direction." The storm clouds don't have to be present for this to happen, and while your outlook can be shiny with unbridled optimism, it can be dropped at a moment's notice with a seizure that can greatly affect your health or take your life.

This is by no means a happy post, but it is the reality. Sometimes life isn't pretty, and the results of SUDEP, whether it being my son sitting on a gurney gone, family members and friends devastated, or this story being repeated so many times not only in the U.S., but around the world must stop. Two thirds(66%) of epilepsy cases, there is no known cause. That must decrease in number, along with an increase in preventing the pain of SUDEP, and generating funds for epilepsy research. That's the bottom line, because while "well intentioned awareness campaigns" have helped, there's still a long ways to go. Results are what matter, and it is our moral imperative, to not only fight seizures with a strategy of aggression and purpose simultaneously, but to ultimately find that cure. With the technology of medical robots and other developments unfolding, now is the time. By continuing to wear purple, getting involved in your communities across the world, and helping out organizations like the Epilepsy Foundation and CURE, you can make a difference in so many avenues of attack.

No comments:

Post a Comment