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Notebook: Epilepsy

October 22, 2009 2:50 PM

More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined. Katie Couric previews her report on a disease that may not be getting the attention it deserves.

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by lynnkenn October 30, 2009 1:46 PM EDT
My son has had epilepsy since he was a baby. It is so true that this condition is in the shadows, it is an uncomfortable situation for those who do not understand it. My son is now a teenager, he has been seizure free for one year, but we have been down this road before. You can never feel comfortable that it won't happen again.

He has lived his life being careful in everything he does. He was very athletic and a promising baseball player, but the seizures ruined that for him. High school was difficult, but the kids that knew him understood and came to his aide many times. Still the emotional heartache can be devastating. He often asks, why me? Why can't I be like everyone else. Why am I abnormal?

Having epilepsy means your choices in life are more limited, there are just certain things you can not do. You strive for normalcy.

You never know when it will happen next, (he does not have an aura) where you will be, what you will be doing at the time, will there be anyone around to help you? As a mother, I fear for him each day, but try to keep this to myself so he can lead a normal life.

I hug and kiss him everyday when we say goodbye, fearing in my heart what could happen. There is also the possibility of sudden death due to seizure. This is what I live with, what he lives with.

His condition can not be corrected by surgery, so he will live like this the rest of his life.

This segment is important, to teach people about epilepsy, to bring it to the attention of the public. It could save a life.
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by Susangr53 October 27, 2009 5:39 AM EDT
Katie,

Thank you so very much for doing this show on Epilepsy. I've had epilepsy for over 44 years and my doctor JUST said that I do have epilepsy. I've been diagnosed with epilepsy since the age of 9 yrs then at 34 it was said that I had nocturnal myoclonus; then at 49 it was pseudo seizures. Well they were wrong I do have epilepsy. It is a struggle to live with epilepsy when it isn't controlled but when it IS controlled it's a wonderful life. Having been diagnosed with epilepsy is not the end of the world for so many of us. We work, have children (I have two wonderful daughters), I drove at one time but not now; I live a somewhat full life. At the time I'm trying to gain attention for Epilepsy. As you are aware there is a walk that takes place at our Nations Capital and it will be in March 2010. So I really hope that we can get a lot of attention steered toward this walk. It is to raise money for the research for a cure for Epilepsy.

We need to really get the word out to all forms of communication about the different types of seizures that so many people with epilpsy have. The one type of seizures that people think of are the one that you showed on tv which is great but people need to be aware that are so many other forms of seizures. There are several different sites to go to to get information on epilepsy. There is one that has a chat site which is epilepsy.com and epilepsyfoundation.com is starting another one. Both of these sites have been chats where you can talk to someone who has epilepsy or knows of someone who has it. On the epilepsy.com site they also have a time where you can ask questions about the surgery that many have had too. That is soemthing that I am hoping to have in the near future as well. So yes life does go and my husband is wonderful and loves me for who I am which is a true blessing in itself.

Live, laugh and love those you cherish. God bless you Katie
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by Shannen03 October 26, 2009 2:06 PM EDT
Thank You so much for helping to bring Epilepsy out of the shadows. I too am a person living with Epilepsy and after reviewing all of the previous comments am surprised to notice no mention of the Study Monica in San Francisco @ California Pacific Medical Center is participating in. The importance of this kind of research is beyond necessary and too many times goes unnoticed.
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by PeggySorrell October 25, 2009 11:19 PM EDT
I have epilepsy and multiple sclerosis. It is devastating dieases to deal with on a daily basis. Thank you for airing this important medical segment to the public about individuals who suffer from an uncontrollable neurological diesase.

Peggy
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by staceychil October 25, 2009 9:20 PM EDT
Thank you Katie for making society aware of epilepsy. So many people suffer from it, but yet very few talk about it. We need more people like you to help bring awareness to society and educate the people in the world about epilepsy. Everyone who has it should come out of the closet and become an advocate for positive change.
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by staceychil October 25, 2009 9:16 PM EDT
My name Stacey Chillemi. I developed epilepsy at the age of five from a virus called encephalitis. The virus had traveled to my brain and caused scar tissue damage - until this day they are unable to locate the damage tissue, which causes my seizure. The tunnel I have traveled through has been long, dark and dreary, but I never gave up. Many times, I felt alone, in denial, anger flowing through my veins with thoughts flowing in the back of my minds of "why did this happen to me. I never gave up I knew that there was light at the end of the tunnel and I was determined to reach the end of the tunnel.

My positive attitude and my will to reach the pot of gold at the end of the rainbow helped me become the person I have become today. In my eyes I am a success not because of the assets I own it is because I have accepted my disorder, I learned how to cope with my disorder and live a healthy, happy healthy life with epilepsy.

My goal is to help others - help others to realize that life does not end because you have epilepsy, you are not alone, and your dreams could become a reality. Just because you have, epilepsy does not mean you cannot accomplish your dreams. You are just as wonderful as the person next to you. You can definitely make a difference if you believe in yourself and look at life with a positive attitude.
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by staceychil October 25, 2009 9:15 PM EDT
At eighteen, I was issued a license that right of passage so important for a young person striving for independence and autonomy. I was even more excited to get my license since I always felt different from the other kids and that I had something to prove. Now, the gap was closing (no pun intended) and I was just like all the other teenagers, one of the gang, the cool girl in school with a license.

Picking my friends up and driving to the mall quickly became a ritual. We shopped until we dropped and enjoyed every precious moment. We helped each other pick clothes, buying like crazy until our wallets were empty. The morning after a shopping spree would find as at one or the others house, helping each other get into our new pants that we purposely bought two sizes smaller. One of us would get on the bed and the other two would help pull up the pants. I can still hear Marie yelling at me to stop breathing and hold in my stomach!

No new purchase was sacred; we swapped our new clothes and could make three new outfits look like ten. As our closets grew, so did our friendships. We bonded, shopping being the experience that brought us closer. No matter how different we each were in personality, we all had a love for shopping in common.

At nineteen, life changed, as you would expect, it should for a young woman about to become an adult. Only my change wasn?t typical. While I was driving with my boyfriend (who is now my husband) on a winding, country road in New Jersey, I suddenly went into a seizure. My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal. Our future together flashed before us as the car headed straight toward a telephone poll. Fighting me for the wheel was worse than fighting a boxer or wrestler. I had no control and while in the throes of the seizure, I had the strength of a couple of bouncers. Finally, my boyfriend got control over the car, steering it safely away from the pole and bringing it to a stop. By then my seizure had passed and a new era in my life began. An angel was watching over us and spared our lives that day, but my license was revoked and my days at the mall became fewer and more difficult to arrange.

I never expected that not being able to shop whenever I desired some retail therapy would have such an impact on my life, but it did. I became a prisoner in my own home, no longer able to hop into the car and go to the mall, to Dunkin Donuts for a cup of coffee or Blockbusters for a video. I was at the mercy of other peoples schedules. Not one to ask for peoples help, my isolation became chronic. I felt very alone. I was a strong, independent person and I wanted to take care of myself. I wanted to be that successful woman working in New York, shopping her heart out after work then going to the bar to have enjoy an evening martini with friends. But that ideal wasn?t realistic; my dreams didn?t seem to have a chance. My confidence was shaken, my self-esteem at an all time low. How was I going to be a success? I had epilepsy. Where was my life going? What was my purpose? I was depressed, hiding from the world and feeling hopeless inside. Afraid to tell others how I felt, I was trapped.

Having the freedom to choose where, when and how you want to go somewhere is something we all take for granted. I didn?t realize how my shopping helped me until it was out of reach. Going to the mall had allowed me to focus on all the pretty things and my old wounds took a back seat to the pleasure of shopping. As time passed, I began to accept my disorder and the consequences it brought along with it. I learned to accept the limitations in my life. We all have them. We all need help some time or another. I finally broke through the wall that had become my prison and I began to heal when I sat my family and friends down, opened my heart and let my feelings and emotions pour out. I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.

There?s no substitute for the fun I have with my girlfriends on a day at the mall. However, the wonders of technology have opened up the world and I have become an avid internet shopper. Shopping, in every form will always be my escape, a pleasure that helps keep old wounds healed and brings peace to my soul, much to the chagrin of my husband-and to the delight of my neighbors who speculate about whets going on between me and the UPS man.
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by coty56 October 25, 2009 9:13 PM EDT
Katie,
Thanks for segment. My family has walked the National Walk for Epilepsy for 3 years. It is always great to be surrounded by others who understand and support you, but your segment has publicized this disease even more. My daughter is 15 and has had more than her share of challenges with epilepsy let alone being a teenager with epilepsy.
Thank you for representing her and millions!

Coty56
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by Paradisa1 October 25, 2009 8:45 PM EDT
A parting statememt, I met my wife and my best friend at an Epilepsy Support Group Meeting. We are a strong and understanding group that can do alot for each other - For every action there is an equal and opposite reaction. Not everything that comes out of Epilepsy is negative, it's just for the things that matter most, you have to be willing to work and wait ... a little longer!
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by kyps11 October 25, 2009 8:28 PM EDT
Katie

Thank you for doing this segment on Epilepsy my daughter has been having seizures since she was 6months old the were fever seizures then at the age of 7 she stopped having them i was so happy I thought she grew out of them but at the age of 8 on her birthday she had a seizure and shortly after that she was diagnosed with Epilepsy and was put on medication which has not stopped them but has helped reduce them she is 9 now she struggles in her school work and is a year behind due to her seizures. She also struggles emotionally she tells me mom I dont like them please make them stop it break my heart.its an every day challenge for her.Its wonderful to see some attention being brought to Epilepsy.
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by teammember October 25, 2009 8:10 PM EDT
Katie,
Great article. The main point is bringing the attention to our society so employers can follow the ADA EOE and how many centuries epilepsy has been treated in the medical field and so many military troups are getting this specific disability is ALSO very powerful in the chess game of getting the US Econmony back on it's feet.

Junior
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by Kel-S October 25, 2009 8:08 PM EDT
We certainly need to de-stigmatize epilepsy. When my daughter had her first seizure as a preschooler we got a lot of compassion and never attempted to hide her diagnosis. She is now 15 and has experienced discrimination from sports organizations, insurance companies, peers, and even extended family and medical professionals. I am thankful that the Axelrods and others are helping to further the cause for awareness, understanding, and funding towards a cure.
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by Paradisa1 October 25, 2009 7:56 PM EDT
I have had Epilepsy for over 30 years, stigmas may be the same same because of a mis-informed public, but every seizure and every person is different! I am married to a woman with epilepsy, hers has been brought under control, mine has not. I run a small support group in the Chicago area for people with Epilesy, so I know many different stories and one of my friends has just died. I lost a marriage because of Epilesy, I have lost every job because of Epilepy, but because it is an "invisable neurological condition", many don't see it until they are scared to death. But after 30 years, I am not scared of my seizures, but after watching shows like this, society and the other disabilities the years have placed upon me dealing with this life ... have disabled me.
C.U.R.E. states tens of thousands of people die each year from epilepsy in a Chicago commercial ... that does more harm to the commumity of people trying to make a life in this world with epilepsy than it could ever do good. I have no problem with C.U.R.E. and the research work they are doing to help everyone fighting for their lives and to get better, but try and understand, some us will never be cured, and have to live in a society that already fears us! I am a writer and will be glad to work with anyone and everone to get both groups on the same table.
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by jwgeer October 25, 2009 7:55 PM EDT
And you wonder why America is fed up with the "mainstream media"??!! Epilepsy with Axelrod and Medicare with Obama's Attorney General!! YOU have officially lost any decency and credibility that you may have had! I fully expect to audited by the IRS because of this email!! -J W Geer
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by beachlover12 October 25, 2009 7:39 PM EDT
As a person with epilepsy, I had an issue with them showing a clip of the woman having a seizure.
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by DonnaAngel October 25, 2009 5:38 PM EDT
Katie,

Thank you so much for doing this story. I lost my daughter Madeline Angel last year to a refractory seizure. She was 4 years old and started having seizures at 3 months. There has never been a diagnosis only a poor prognosis of death in a year. She had genetic and chromosome testing all normal. Three induced comas before one year old and at home 8 different prescriptions and ACTH injections. Out of desperation and " running out of options she stated the Ketogenic diet July 05 and she became seizure free over a year with only 2 prescriptions and supplements. She started going to a regular school with an emergency nurse on staff and thrived and developed... Unfortunately her seizures came back in Oct.07 more critical , her neurologist gave us a referral to the Mayo Clinic and we talked about getting a prescription of Versed in England to bring back to the States because it was the one drug that worked for her. We had to wait precious minutes for the fire rescue to give it to her. It was very frustrating that Versed was not prescribed in the United States and every drug we tried here did not help her. Eventually a refractory seizure in April 08 took her life. She went into status and lack of oxygen turned into septic shock. Madeline had about 38 admissions and 5 induced comas. She was a fighter. God Bless her beautiful soul.
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by jawsjr1 October 25, 2009 2:47 PM EDT
Katie,

I have been dealing with epilepsy for 39 years. I should be dead. My worst attack was 12 seizures in 9 hours, status of the last 5 seizures for 1 hr 45 min. blue and choking the whole time. My epilepsy got worse as I got older. In 1995 I was put on the UCLA Vagus Nerve Stimulator Study. I became a success story. It changed my life! Now I am a motivational speaker and working on my BA in Communications at Cal State Northridge. I recently did a speech on Epilepsy at Louisville High in Woodland Hills California.

Seiz-ure Life, you are not alone
Once you put your mind to it, you can do it

Thank you so much for spreading the word.

Sincerely,
Jennifer Strigle
Jennifer@championthechallenged.com
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by MattyFund October 25, 2009 10:12 AM EDT
Kudos to David Axelrod for using his political muscle as a senior advisor to President Obama to enlighten the general public about epilepsy. Epilepsy can be a KILLER-we know we lost our five year old son, Matthew Siravo to a prolonged seizure and now we fight for children with epilepsy to give them a chance. We may be the ONLY organization to help children NOW that are faced with epilepsy. We created a resource center for children & families, offer a monthly support group, created a summer day camp for therapeutic horseback riding and much more. We want to help children & families now, while they are going through this difficult period. They need support, guidance and a place for answers. Obviously, research is important and we have a bonafide research committment, but research answers can take 20, 30 years. Simply ask the question; What are you doing for the families today that are going through this? Checkout www.MattyFund.org and see what we've done to help children & families struggling on a daily basis. Se how the loss of young Matthew has inspired us to help, assist, promote and educate epilepsy everyday throughout our region. www.MattyFund.org
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by kinsale21 October 24, 2009 8:46 PM EDT
Katie -

I cannot thank you enough for telling our story. I have a sister, two cousins - one deceased - and now a daughter with epilepsy. One aspect that most people don't realize is how much this condition can change throughout a person's life. My daughter had absence seizures when she was younger and the doctor's thought she had outgrown it, only to have it return last year as myoclonic and now tonic clonic seizures. Every pregnancy my sister and cousin had would impact their condition and seizures would return. We are very lucky that in my family medication has eventually controlled the seizures. Unfortunately, it can take many months or sometimes years (we are still searching for my daughter) to find the right combination and dosage.
As others have stated, if the condition isn't bad enough, the medication side effects, people's lack of understanding and the emotional toll it can take on someone can be just as devastating. Many thanks to you and the Axelrod's for shining a light on a condition that has been in the shadows too long. Today you don't have to wonder if your work has made a difference - it did.

Many thanks,

Ellen
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by bonp October 24, 2009 12:57 PM EDT
Katie--
As a wife of a man that has epilepsy you are greatly appreciated for bringing this story to light. I cannot even tell you how much humiliation my husband has suffered from his job due to this medical condition. I am so thankful that someone is finally giving this condition the coverage it deserves. He has lost income due to this condition, has been passed over for jobs due to this condition and has to endure comments from co-workers saying "I wish I had a medical condition like you so I could have it as easy as you do." If they only knew what we go through with this condition they would be careful what they wish for. If you actually ever witness someone have a seizure as I have my husband several times it is not something you would ever wish for anyone to have to go through. Again my most heartfelt thank you to you for covering this on your show. Thank you so much. Bonnie
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