Did you know that there are more than 50,000 epilepsy related deaths per year? How about breast cancer kills around 36,000 people per year? I didn’t either, until recently. I didn’t know that there was something called SUDEP and that it means “Sudden Unexplained Death in Epilepsy”. I didn’t think I even knew anyone who had epilepsy and then Stryder was diagnosed at the age of almost 4. (Read how seizures have affected Stryder.)
Epilepsy deserves to be talked about, so why isn’t it happening? We all know others with epilepsy, but do you really know how it affects their lives and the changes they have to make or the fears they feel? I know I didn’t. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75 and yet, there is little to no attention on it by the medical community or the public.
Why is epilepsy rarely talked about? Why don’t we know more about SUDEP (Sudden Unexplained Death in Epilepsy)? Why is there not more attention? There may be a few reasons why, but the biggest is because people assume it’s treatable. While this is true in some cases, many people still suffer even on medication. Those that are seizure free on medication still have many side effects from the medications and often have to take many forms. Another reason is because it’s not thought to be fatal, especially if on medication. We assume that medication works and everything will be fine, but we have personally learned that the quiet times are the most dangerous.
We need the same sincerity from our friends who say they have cancer when we say “I have epilepsy.” We need to educate our friends and even our doctors and teach people that it’s okay to talk about the bad side of epilepsy. We need to teach people to not be afraid of it, but to fight against it and educate with it. We need to invest in epilepsy like we invest in other searches for cures and it starts with you.
This is where you can help: Please take a moment, share this page, share my Google Doodle or just ask others about epilepsy and what it does to them. I, personally, have a goal to get my Google Doodle on to Google’s search page next month, at least for one day, in time for epilepsy awareness month. If you would like to help, write to them or call them-please our case. Not only for us, but for your friends. It’s the first step in getting awareness about Epilepsy. The more people we can get to call or write, the better chances we have to get Epilepsy noticed on Google’s homepage.
1600 Amphitheater Parkway Mountain View, CA 94043
Phone #: 1 650 253 0000 fax #: 1 650 253 0001
Ellen’s Facebook page is here.
So let’s SHARE, SHARE, SHARE and SHARE some more…. I need you, we need you!