Spoke with NBC

[Porkette]

Hi Folks,
I just wanted to let you know that I spoke with NBC today (Aug. 21st) and told them how I felt epilepsy was growing in America but not enough research was being done to help all of us and stop our seizures.
NBC was very interested about it and they told me to e-mail them my story and anyone else that was interested in sharing their life with epilepsy and what you thought should be done to make things better for
yourself as well as others with epilepsy.

If you are interested you can e-mail them at the following address dateline@nbcuni.com or you can call them at 212-664-3720

Here's wishing all of you only the best and May God Bless You,

Sue

[Tattoo2]

This sounds interesting. I am still in school and cannot come out of the epilepsy closet. We all know what happened last time. That is the real story to me. The stigma that still continues to exist that affects our quality of life and ability to reach potential in the work place as well as in other ways. I want it to get the attention that is given to Autism, Parkinson's, MS, Alzheimer's, etc. Those are much more accepted and understood than epilepsy, and they stay in the public's face so that they become used to hearing about them. Those illnesses gain acceptance as well as those with the condition.
This has not happened with Epilepsy, and it needs to change as it will positively affect our lives by not having doors shut in our faces if it is known or not being sold short etc. I read an article titled "Yuppie Eugenics" that pertained to just this. The goal was to keep those with epilepsy and poss other conditions held back and prevented from succeeding in order to separate them from society as the outcome. Maybe they'd commit suicide etc. Because epilepsy is the most common Neurological illness, it deserves greater attention that it receives!! The last time I heard it mentioned as on Criminal Minds regarding a boxer who beaten someone to death. Wonderful! That stigma and misunderstanding has to change! I feel there is much research as new devices have been developed since the VNS and DBS even. For years now, I have heard that the funds from the NIH earmarked for epilepsy is thought to be sent to the CDC and then to the EFA where it goes to the drug companies. That seems to be lots for research but only for drugs. Much of that should be used for "de-stigmatizing" epilepsy by educating the public on what exactly epilepsy is and all treatments available thereby increasing our quality of life by gaining unconditional acceptance as the productive, valuable members of society that we really are. You have to ask what would happen if a cure was found, which I do not ever expect, or a treatment that did stop seizures very well in many people. Would it ever gain FDA approval here and be made available? Thank you for speaking out. Tattoo

[Porkette]

Hi Tattoo,
What you have posted is one of the main reasons why I spoke to NBC I'm tired of being pushed off like I'm worth nothing because I have epilepsy, It's harder to get life and health insurance, people certainly don't know what to do
if someone is having a sz. and like you said a lot more research has been given to autism, Parkinsons, MS, and Alzheimers. All of those people who are willing need to speak up and let the world know that epilepsy is growing in the U.S.
and they need to do more medical research and start treating people with epilepsy like your everyday person without cutting us down or increasing our insurance rates let alone refusing us insurance. I could go on for a long time on
what needs to be done but I would take a long time. The more people that speak out about epilepsy and share their stories of brain surgery, side effects of drugs and other matters the better chance we have at having research done.
Wishing You Well and May God Bless You!
Sue

[tigerchef1969]

Thanks sue thats great

[Porkette]

Hi Jeff,

It's great to hear from you. I hope all is going well. I don't know how it will go over but if enough people either e-mail or call NBC they might do a story about epilepsy, and how it effects people ex. taking AED's and their
side effects, brain surgery, getting insurances without being turned away or having to pay high prices, as well as how they aren't giving us the updated medical treatments that can be done to help those who have epilepsy.
As I've said before it's time for people in this world to wake up and realize they need to do more research and studying on epilepsy. Wishng You only the best and May God Bless You!

Sue

[tigerchef1969]

thanks sue i did email them although i can't type no longer I bought a very nice voice recognition software that does it all God bless and lets all e mail them!

[Tattoo2]

HI Sue, Just to clarify what I wrote, I was not speaking of research when I wrote:

"I want it (epilepsy) to get the attention that is given to Autism, Parkinson's, MS, Alzheimer's, etc. Those are much more accepted and understood than epilepsy, and they stay in the public's face so that they become used to hearing about them. Those illnesses gain acceptance as well as those with the condition. "

I do find much more public awareness given to these illness and therefore acceptance etc. None is given to epilepsy. I was not speaking of research as I do not know how much research is done on each illness. As I said, the more the focus is given to research, the less it is given to the effects of the illness and quality of daily life etc. That's my soap box. Thank you for your effort and courage. Tattoo

[Porkette]

Hi Tattoo,
I understand exactly what you are saying. What I would like to find is how foods with MSG and apartame can trigger sz. for some people and why do some AED's have MSG and aspartame in the drug when they know it can trigger sz.
A friend called me yesterday from another epilepsy support group and told me that NBC got ahold of him and is very interested in his story. so who knows maybe in time something will be on the news or on DATELINE. Wishing You Well
and May God Bless You!

Sue

[Porkette]

Hi Jeff,
I'm glad to hear that you were able to get a device so that you could e-mail people. Thanks for sending them a message I plan on calling them or writing them today. The more I keep bugging them the better chance we have
at getting on tv. Wishing You Well and May God Bless You!

Sue

[Porkette]

Hi Folks,
I spoke with a friend today whose very interested in letting others know about epilepsy. He's written a book about epilepsy and much more. If you would like to learn more check out his website
Only registered and activated users can see links., Click Here To Register...
Here's wishing all of you well and May God Bless You!
Sue

[Porkette]

Hi Folks,
Today I spoke with NBC DATELINE and they told me to send them a story about my epilepsy so I did and now I just have to wait to hear from them if they are interested. If any of you would like to send DATELINE a story
about epilepsy and how it's effect you or how more research needs to be done just write to the following address Dateline@nbcuni.com or call them at 212-664-7501. The more of us that speak up about epilepsy the better
the chances are that the world will wake up. Here's wishing all of you well and May God Bless You!

Sue

[hope4Ryan]

Hi Sue,
I am thrilled that this ball has begun to roll, however slowly.. Thank you for this. Tomorrow morning I will be calling the number at Dateline to tell them Epilepsy deserves a broader audiance for awareness. Perhaps they will have some interest in Ryan's story. If nothing else though, I will be one more voice that NBC hears from, wanting attention given to Epilepsy.
Thank you again,
Debbie

[zep4141]

I have a seizure assistance dog named "Aimus" ("aim us" in the right direction) and the public becomes aware of my condition.

[Porkette]

Hi Folks,
Thanks for all of your support, I got a letter from DATELINE and the deadline for any stories to be in by Sept. 28th, 2012. They told me that it would be better to write but you can e-mail them. The more people we have
that are willing to share their experiences with epilepsy like what it cost for meds, how it has effected you getting a job, life insurance and health insurance. As well as were you ever put down in public, did you lose a job
because of epilepsy and much more. It's things like these that DATELINE wants to here. It has been proven now that 1 out of 26 people will have a sz. or seizures in their life. Here's wishing all of You Well and May God Bless You!

Sue

[lor]

If I write, where do I send it? What address? (I wrote a draft yesterday).