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EF Admin's Discussions

Back-to-school Advice

Started this discussion. Last reply by Vicky Nov 15, 2012. 14 Replies

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LIVE Roundtable

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Lil Wayne Opens Up About His Epilepsy

Posted on March 29, 2013 at 3:31pm 0 Comments

Our hearts and prayers are with Hip-Hop megastar, Lil Wayne, 30, and his family as he recently announced that he has epilepsy. In the weeks leading up to his announcement, it was reported that he experienced multiple seizures in a single day. While this incident was unfortunate, the Epilepsy Foundation is encouraged by his honesty and candidness in discussing his condition and hopes that his story inspires others, especially young adults, to openly discuss their conditions.  Raising…


“NOW I KNOW:” Thank You For Sharing Your Stories

Posted on February 27, 2013 at 3:00pm 0 Comments

Whether you were one of the many people who submitted a video, one of the thousands who watched or commented on submitted videos or one of the more than 3,300 people who voted for your favorite, we’d like to thank you for participating in the Epilepsy Foundation’s Now I Know video campaign. It was fantastic to see the outpouring of creativity, support and courage you all demonstrated through your participation.

While our primary aim was to create a forum where people could share their…


**CELEB NEWS: Prince had epilepsy as a child**

Posted on April 28, 2009 at 12:00pm 1 Comment

Have you heard the latest epilepsy news? Rock star, Prince just came out as having epilepsy as a child! http://weblogs.newsday.com/entertainment/music/blog/2009/04/prince_gets_personal_reveals_e.html

As anyone with epilepsy knows, it isn’t easy to have epilepsy—and not just because of all the health issues, but also because of the… Continue

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"I am VERY disappointed that you will close down the other site.  This site's discussion setup is too impersonal for my taste now."
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Helping Others Get Seizure Smart

Tell Us how you plan to help others get seizure smart. We'd love to hear ideas!See More
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National Walk for Epilepsy

This group is for those who have attended, or plan to attend, the National Walk for Epilepsy. Share memories, get important Walk updates & meet others.
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"I was wondering if it would be helpful to reorganize the topic listings some.  Instead of placing so much under "living with epilepsy" maybe we need to create a group just for some popular topics.  "Benefits of surgery"…"
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Helping Others Get Seizure Smart

Tell Us how you plan to help others get seizure smart. We'd love to hear ideas!See More
Dec 23, 2015

Comment Wall (68 comments)

You need to be a member of Epilepsy Foundation to add comments!

At 6:37pm on February 25, 2016, Sabbo said…

I am VERY disappointed that you will close down the other site.  This site's discussion setup is too impersonal for my taste now.

At 7:12pm on August 13, 2015, Maria Elena Jarales said…
Thank you for the warm welcome! God bless us all!
At 11:00am on March 27, 2014, Paul Nim said…

Thanks for the quick response. My sole email address is now pauldelaup@gmail.com. Sorry for the confusion. Feel free to consolidate the two when you get the chance. 

At 5:23pm on March 26, 2014, Paul Nim said…

Hello EF Admin. By accident, I've had 2 sites appear under my name....Paul Nim. Would it be possible for you to consolidate them? Or if it easier, simply delete the one with the fewer articles?

At 10:00pm on December 9, 2013, Robert William said…

if you get time please read your mail thank-you.

At 10:46pm on June 18, 2013, Vic Rios said…

I'm Vic, This site is so overwhelming...with wonderful stories! I can't figure where to start, so I'll start with my story. First, I became a member of this site several years ago but didn't read a lot of "your" stories. I meant no disrespect. As a result, I ended up joining twice. My deepest apology for not doing so. I didn't think I had a right. I'm on 600 mg. Lamictal and 1000 mg. Keppra, daily. It was only recently that I learned about "Keppra Rage" through this site, which explained a lot of my emotional problems I've had since starting the Keppra. Getting to the present med cocktail has been a hit or miss situation. I've tried Dilantin, which had no affect in '96. Then I went to Tegretol, suffered a bad rash immediately, within a day. Then tried Phenobarbitol added with Lamictal, no affect in '99. I've had 3 near severe fatal car accidents in 2000, 2002, and finally 2008. The second one landed me in the hospital with extensive injuries including a fractured pelvis, dislocated hip, and a compound fracture of the left elbow. I was in a body brace from my chest to my right ankle for several months. Christmas that year was conducted from a hospital bed that was moved into my house. The 3rd one I hit someone in the back of an F-150. Needless to say, I have no drivers license. The state says if you haven't had a sezure for 6 mos., I'm allowed a license. I don't know what a good night sleep is, so I take a combination of 10 mg. Ambien and .5 mg. Klonopin. During the night, my dreams are so vivid, it is like I close my eyes to sleep and then drift to a whole new world complete with dialog and movement connected to the story. The problem with that is I'm groggy the next day. I take Paxil for the depression and tremors connected with the med cocktail. The Inderal for the anger issues that comes with Keppra. I also take Inderal because of the tremors I have with the "cocktail". My son lives with me which adds to my guilt that he is loosing the most fun part of his life, his early 20's. I too have speech problems connected with everyday thought patterns which interfers with organization of thought and words. The BIGGEST concern is I have no aura before a seizure occures. There is no warning or aura that warns me. One minute I would be in a discussion or in the middle of a task, and the next, I'm in an ambulance curtousy of my son, a gran mal hits. And they are debilitating; total lost of conscience. Sometimes the anxiety is so overwhelming that it interferes with normal life..what ever that is. And like Bethany Hahlbeck, family members and friends who mean well, tell me the same thing, try eating a good whole food diet, and exercise. Break away from soda and caffiene and other bad things. In other words, punish your taste buds. The deja-vu occurances happen almost daily, periodically. I love my coffee; however, I have one cup. If I get up in the morning. I lost a perfect home for my 3 children and myself. I know many family members and friends mean well when they say get exercise, eat well, relax to twart the symtoms of epilepsy. That's it.

At 9:59pm on May 14, 2013, laura said…
How can I find a comment that was sent to all members of Parents Helping Parents? I received an email but can't find the message /post on the forum page.
At 6:25pm on January 17, 2013, Kari Lynne Brauer said…
I have a couple questions/ concerns. First; I am unable to log out for over a month now. Second; I cannot respond to or send messages or approve /disapprove profile comments. What can I do to fix these issues?
Thanks, Kari
At 12:26pm on November 18, 2012, foufou said…

At 3:39am on October 29, 2012, RANDY SHERMAN said…
I'm hoping this will go straight to the horse' s mouth. You guy want to know some seizure smart IDEAS . Here are a few .
1: If we are going to get ANYONE (besides epileptics) to UNDERSTAND EPILEPSY , we need to do a couple of things . First we need to get this disorder out into the PUBLIC. Bulletins , the big Advertisement on our HYW's , TV , NEWSPAPERS, MAGAZINES , THRU SPORTS , AND i M SURE THERE ARE STILL MORE THING YOU CAN DO.
2: we need to improve the EDUCATION on this disorder, starting w/ ALL SCHOOLS. Then the DR.'s & NURSES who aren't in the special field of Epilepsy. they would probably learn a few tidbits.
3: conferences & meet on this subject need to change. Instead of having them in the BIG MAJOR CITIES , why not do it local thru all the towns cities and suburbs. Treat it as if you're in a music band. The only thing different is, that this would be a regional tour, instead of being national an international tour. Go city to city with the meetings. Other E.F.'s across the nation can do their local tours thru their states. It is VERY DIFFICULT for people w/ EPILEPSY to find or get rides to the meetings when we want. I know I've been in this situation many times. I wasn't even able to go because I'm not able to DRIVE. we are not always garanteed a ride , because someone may have plans or they just don't want drive the distance w/ the price of gas. Taxi's & buses can can get expensive too.
So if this gave you any IDEAS , please find at least a halfway point with these .

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