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.
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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
Stacey Harrison
The driver knew my illness ? We?d spoken before
As the lone rider I rose for the door
I said my thanks
Then my mind went blank
And threw off her schedule and more
I wandered the aisle to her dismay
Instead of my walk to the school PTA
She put on the brake
And couldn?t quite make
Of my movements with nothing to say
The police stormed and placed me under attack
I was easy prey - For knowledge they lacked
They tripped me to the floor
Dragged me through the door
Then they drilled knees in my back
Awaking from the seizure, my body in pain
I called out for help - Only in vain
They had nothing to say
But applied pepper spray
To my eyes and face again and again
The pain was intense ? I screamed for an end
They cuffed me and threw me over the rear end
They bruised my hip
Then drove down the strip
Arresting me into the station
I couldn?t complain ? They?d lied on their notes
"Suspicion of narcotics" ? That?s what they wrote
With police less than truthful
The effort less than fruitful
My chance of success just a joke
So I attended at the station - Presentations I made
About epilepsy to each officers? parade
Now they?re more in the know
And have more to show
For taking lemons to make lemonade
Copyright Bruce Hilliard 2009, with rights extended to CBS News for posting as comment on Oct 25, 2009 episode on epilepsy
We have an entire month devoted to breast cancer awareness and yet many of us are learning for the first time how prolific epilepsy is. The statistics are staggering. The 60 minutes segment is a good start but that is all. Now that you have made us all aware CBS I think you have a responsibiltiy to follow up and get the word out to more people.
Many of us have lost our families in many different ways, my 1st wife left because of the difficulties created by this society for people with epilepsy, others lose their families all the time through loss of life. Still and yet, what we keep hearing about in the media is the importance of keeping the families of illegal aliens together! We have been fighting for our rights and the attention of politicians for years upon years, but suddenly all that seems to be in the news today is something called "gay" rights. It seems everyone is continually pushed past us in importance, funding and legal rulings.
Why does it seem people look at us and then think and act as if "All Men Are Created Equal" - except those with disabilities! This is a war that must be fought at both ends with equal passion ... The Axelrod / Reasearch / Medical end and the Legal / Political / Disability Rights End. Both affect people with Epilepsy in huge ways, but this battle will never be over! We just don't seem to get promises during campaigns that things will be done in a certain amount of time and we don't threaten others if they don't work with us they are being "discriminitory". Nevertheless, it the President can make promises every which way but loose, he can make promises to us too, "Yes He Can!"
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