Epilepsy: Fighting For A Cure
October 25, 2009 5:00 PM
More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined. Katie Couric reports on a disease that may not be getting the attention it deserves.
Recent Segments
Scroll Left Scroll Right
- 1
- 2
- 3
- 4
... - 17
- next
See all 170 CommentsOn October 30, President Obama issued Presidential Proclamations for the month of November for the following:
National Alzheimer's Disease Awareness Month
National Diabetes Month
National Adoption Month
National Family Caregivers Month
National Native American Heritage Month
As of 4:00 p.m., November 10, the White House has yet to issue a Presidential Proclamation for National Epilepsy Awareness Month.
The fine 60 Minute piece called Epilepsy: Fighting For A Cure was a good start at improving public awareness about epilepsy and the 3 million people in the U.S. with the disorder, including the work of Susan and David Axelrod in putting a face on the disorder and seeking a cure. One would think that given the influence of David Axelrod in the Obama Administration, a National Epilepsy Awareness Month proclamation would have been issued at the same time as the others.
Go to:
http://www.whitehouse.gov/contact
Leave a message asking for the President to issue an Epilepsy Awareness Month proclamation. We must be our own best advocates.
When you find out your child has uncontrolled seizures, you feel so alone. But after you look around you realize that their are 1 million Americans in the same boat as you (that's the same number of Americans that have Parkinson's Disease). So you realize you are not alone in living with uncontrolled seizures, but then you start to wonder why you've never heard of epilepsy before. Why didn't you know it was such a terrifying, frustrating, life-altering illness? Why do doctors tell you epilepsy is not a big deal and your kid can still have a normal life (that's only true for 2 in 3 kids)? Why do the best weapons we have against this illness, anti-seizure medications, have such devastating side effects? Why do we NOT know the cause of epilepsy in 70% of all cases? Where the heck is the research?
It's sad to me that my child, who is 12 years younger than Lauren Axelrod, has the same heartbreaking story. We need more research. I think your segment, and what the Axelrod's are doing, is a step in the right direction to help with this. Thank you so much again for doing this story. And thank you Axelrod family.
Thank you so much again. Please follow-up with more stories.
Doctors will tell you my body chemistry changed when I had a child. They may be right. The whole thing is a mystery, as we know. But the seizures didn't stop when I had the baby. They stopped when I cut the cheese.
Sometimes the answers come from the oldest sources. Yay for my brother!!!!
When he was being treated for Epilepsy no one ever mentioned the possibility of SUDEP ? not his neurologist, not Children?s Hospital, not the Mayo Clinic. We were specifically told that Epilepsy is only dangerous under 2 conditions ? if he has a seizure while doing something dangerous (like swimming or rock climbing), or if he went into status epilepticus. The message was very clear ? if he took his meds everything would be fine.
When my son died I expressed my frustration about the lack of visibility of SUDEP to my primary physician, who was involved in my son?s treatment and is also an ER Doc . He replied that even he didn?t know about SUDEP until I brought it to his attention. It?s also very interesting to compare SUDEP with SIDS ? they have similar characteristics, strike seemingly health people, leave no evidence after the fact, and there is nothing to do to prevent them. Yet SIDS is widely known among the general population, and 90% of doctors who are not neurologists haven?t ever heard of SUDEP. And SUDEP kills twice as many people as SIDS in the US.
The medical (neurological) community does not want to publicize SUDEP. But until we publicize it we won?t have funding and until we have funding we won?t have a cure.
We have to start somewhere.
Melissa Hilt
- 1
- 2
- 3
- 4
... - 17
- next
See all 170 Comments