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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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by sdbritt November 14, 2009 10:42 PM EST
As the parent of a child with epilepsy I'm very happy to see this kind of high level attention being drawn to this often misunderstood condition. Thank you CBS News, keep up the fine work. For an incredibly poignant look into the life of a family affected by epilepsy, I highly recommend the book written by Mary Lou Connolly, who has posted on this site. The book is Missing Michael; A Mother's Story.
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by m51ngc5195 November 10, 2009 5:17 PM EST
November is National Epilepsy Awareness Month.

On 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.
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by stoback3 November 5, 2009 7:31 PM EST
This was an amazing piece for so many reasons. Millions suffer from epilepsy every day and yet we still don't have a cure. Susan and David Axelrod have been incredible pioneers in theirs efforts to help these nameless millions and find a cure to stop seizures and the its debilitating affects on the brain, body and overall quality of life. 60 Minutes did a great job talking with the Axelrod family and sharing their personal story to viewers and even more importantly, explaining the staggering facts and statistics about epilepsy. I am mother of an 8 year old who suffered from seizures as an infant and for years after; his seizures left him unable to speak and walk. I applaud 60 Minutes for covering this disease so eloquently and hope it raised awareness so that no more children or adults have to live with the horrible and inevitable impacts of seizures.
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by ctobin2763 November 5, 2009 3:52 PM EST
Thank you for airing this piece on epilepsy. More needs to be done to bring this disorder to light. Many people are in the dark about it until they know someone who has epilepsy. Their stories need to be heard to increase awareness and increase research funding so a cure can be found. Don't give up on them!
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by DeathByPastry November 3, 2009 9:41 PM EST
Thank you so much for doing this story. My daughter has been having uncontrolled seizures for 14 years and, like Lauren Axelrod, she has suffered tremendous damage to her brain and her abilities. Our once vibrant child with all the potential is the world will now forever be dependent on others for her health and well being - or at least for as long as she lives.

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.
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by katietoo1 November 3, 2009 7:47 PM EST
to continue... When my son was born, he was allergic to dairy. If I was going to nurse him, I had to give it up. IT WAS HARD. REALLY hard. But amazingly, when I gave it up, my seizures stopped. I have been virtually seizure free for four years. If I gave up the sugar, too, I would probably be able to say goodbye to the occasional petit-mal seizure I now experience.

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!!!!
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by md1274 November 1, 2009 8:14 PM EST
I want to thank you for your news report. I have a three year old son that has epilepsy and we have tried numerous of medications and his seizures are still not under control. He has a total of 15 to 20 seizures which consists of clusters a day. We have even tried steriods which did help, but after he was off, they came back. He no longer have the jerky seizures, but now he has the drop seizures. He wears his helmet daily and it does help with the fall. He is developmental delay and he is not talking. He just started school which he has speech, OT, and DT everyday. My only wish and hope is that is will outgrow it. I came to the realization that he will be taking medicine everyday but I want the seizures to be under control.
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by eimh4evr October 31, 2009 8:39 PM EDT
My son started having seizures when he was 16. After trial and error with several different medications and over the course of months we were finally able to get his seizures under control. Then, 4 months ago, I found him in his room, dead from SUDEP at the age of 19.

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.
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by melissa10478 October 31, 2009 7:03 PM EDT
Thank you for getting the word out about epielpsy. I have a 2 year old little girl who started seizing at 6 weeks old. We have been through multiple medications and hospital admissions over the past 2 years and have struggled to find information ofn Haley's type of epilepsy. Your seagment has helped to explain to family just what it is we have been going through. Thanks Agian.
Melissa Hilt
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by concerned555 October 31, 2009 5:04 PM EDT
Thank you for your coverage of Epilepsy. I had no idea how wide-spread this was. I hope that your coverage will spark more debate and funding for this devastating illness.
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by stacharrison October 30, 2009 7:24 PM EDT
Thank you for doing this story. It is obvious that more information needs to get out about epilepsy. I am sad to read some of the previous comments about trying to hide it. I am amazed to learn that more people have epilepsy than Parkinson's, MS & cerebral palsy combined. We hear about those 3 so much - maybe because many celebrities have admitted to suffering from them A dear friend's son has epilepsy and having been free from seizures for 5 years just had one earlier this week. She does so much to raise money and awareness. We need more press on this issue - so more money can be raised to find an actual cure - not just drugs.

Stacey Harrison
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by BRUCEHILLIARD October 30, 2009 6:33 PM EDT
LEMONADE - Living with epilepsy

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
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by writer33 October 30, 2009 3:19 PM EDT
I have epilepsy and the report on epilepsy was a good one. No one really knows too much about it. I think when most people think of a seizure they seen a person shake and that is it. Maybe they shake because they are wierd or something, not that they have a really illness. But yes epilepsy is real and serious. I have had epilepsy for the last 12 or so years. It has taken a toll on me and my family. I have been on 8 different medications and now I am on 3500mg of meds and I still have seizures, plus I have a VNS. I have Mynoclonic, Atonic, and Gran Mal seizures. The worst being Gran Mal when a person passes out and shakes all over. I have the other ones every day or other day. My son who is 15 years old is just starting to come around me after I have a gran mal seizure. He used to go in his room and cry. I used to work but now since I moved to a different state I don't. The reason being, I was fired off a lot of jobs because of my seizures and it hurt so bad. But the last job I had my supervisor was great. She seen me have a gran mal at work and still let me stay at work but after the Hurricane, I had to come to California. Where I am originally from. I am on disability right now. I can't do nothing, work, drive, walk by myself. I feel like a toddler and I hate it. It seems like the only ones who knows what myself and others who have epilepsy go through are family members and friends. It is very depressing and hard. It seems like I will get better and then, BAMM! I had a gran mal seizure two months ago while I was in the bathroom. I can't take a shower if I feel bad. I have had one in the shower, while cooking, walking to the bank, leaving for work. Me and the floor and concrete have become friends over the years (smile). I have eight scars from falls due to having gran mal seizures. My neurologist is a great doctor and he works with me. The meds I take are exspensive but he makes sure I get them but their are people who can't get them. I have talked to people who haven't taken their meds for months because they have no insurance or no money. If I don't take my meds on time I feel bad so I can imagine if I didn't take my meds for months. I just want everyone to know how bad epilepsy is and we need help. We need more meds and other ( I can't even think of the word or words because my mind is so gone from the meds and seizures), help mechanisms. Epilepsy is a real sickness or illness what ever you want to call it, it hurts our community, it even kills people in our community. So please help and support epilepsy research. Thank you :).
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by jhutch1957 October 30, 2009 2:42 PM EDT
Another very tragic piece of this story is the number of people who loose their lives to SUDEP - Sudden Unexplained Death in Epilepsy. As many as 1 in 350 people with uncontrolled seizures pass away each year to SUDEP. I recently lost my 16-year old daughter this way and about 2 years ago, my mother as well. No one EVER told me seizures could be fatal. Even after my Mother passed away and it was obvious she had had a seizure, I asked both my Mother's Neurologist and my daughter's and in both cases were told I had nothing to worry about - that her death was do doubt due to her age. I never heard the term SUDEP until after my daughter's passing. Since then, I personally have heard of no less than 13 other families who have lost children and loved ones to this. 60 Minutes - PLEASE do a segment on SUDEP as a follow up. There is a SUDEP Research Group in here in Denver who I know could speak more intelligently about this than I and would jump at the chance of getting this information out. I am writing as a heart-broken mother of a bright, beautiful 16-year daughter who was the love of my life!
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by gardinerlapham October 30, 2009 1:52 PM EDT
Thank you 60 Minutes for covering this devastating and important issue that has been in the shadows for far too long. My 4 year old son died from epilepsy last year. He had only just been diagnosed with the disease and was an other wise healthy child before he died from SUDEP---sudden unexpected death in epilepsy. Since his sudden death I have gotten involved with CURE, the organization that the Axelrods helped found, and believe that they are making a big difference in epilepsy research. Please see their website for more information and to help in the battle for a cure. www.cureepilepsy.org
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by Cathcc October 30, 2009 1:33 PM EDT
Kills as many as breast cancer??
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.
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by October 30, 2009 8:43 AM EDT
Where Dr. Salk found a cure for polio in the 1950's Big Pharma realized there is no money in curing anything. They just want to control the symptoms. Look at the horrid history of our health care the last 50 years. Profit is their only priority. Posted by Baileyccc
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by Paradisa1 October 30, 2009 1:03 AM EDT
Hopefully the last comment I will make on this 60 Minute report on Epilepsy (until the next one) and then I move on. Against the Neurological Condition Epilepsy, there IS an ongoing battle in progress and we are losing.

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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by zaki-smom October 29, 2009 11:33 PM EDT
I think that covering all the aspects of this terrifying beast would be quite difficult at best and next to impossible at worst. There are so many facets to epilepsy. I am thankful however that 60 minutes did try and put epilepsy on the map so to speak ? we need more public awareness and we need to tear down the stigmas associated with epilepsy ? I think this was a great START. There are definitely more complex issues to be covered. Diet therapy, medication side effects, and the issue of generic vs. brand name medications? the list could go on and on, but I do feel like the issues they brought up specifically the lack of funding needs to be addressed. My son has suffered with uncontrolled seizures practically his whole life. He is my hero! I wish that there were even more public figures to champion the cause, so more would not have to consider epilepsy a dirty little secret. Heather Jackson www.ataleoftwokings.blogspot.com
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by jeneecummings October 29, 2009 10:44 PM EDT
I am glad the word is finally getting out about epilepsy. Would love to see an more in depth program as well as dietary therapy.
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