When I was 17, I was diagnosed with epilepsy. The good news is my epilepsy is controlled by medicine (unlike some people who suffer from this disorder). The bad news is I have epilepsy- a random, rare version caused by sleep deprivation and extended periods of reading.
When I was 17, there were no online resources to go to find out more information. In the early-mid-90’s, there was barely an “online” at all. Your lucky friend may have had AOL, but you were not likely to use it to research seizure disorders. Instead, you were probably on it to find out when your favorite band was at the Tweeter Center. Thankfully, today we have websites like TalkAbout It.org.
TalkAboutIt.org is a website and 501(c)3 charity created by actor Greg Grunberg – known for his role on Heroes. The goal of the website and the Talk About It organization is to “end the misperceptions and misunderstanding about epilepsy and seizure disorders.” Greg was inspired to create this website after his eldest son was diagnosed with epilepsy and he wanted to help end the stigma around epilepsy while working to find a cure.
The website works as virtual subway with a map directing you to train stops for non-epileptics and epileptics alike, with the ultimate goal of getting people to talk about the condition. Each stop features an introduction by Greg’s celebrity friends like Kristen Bell, Jennifer Garner, John Mayer, Zachary Quinto and Chris Pine, usually followed by a video of Greg interviewing doctors or actual people living with epilepsy. In the videos, Greg broaches topics like dating, bullying, employment, telling your friends & family – things people may not be comfortable talking about with their Doctor.
And if you are worried you or your children are getting medical advice from celebrities, don’t fear. Their bits were scripted and expert advice was provided by the Epilepsy Foundation, the “national voluntary health organization dedicated to helping the over three million Americans with epilepsy.”
Talk About It.org also collects donations to raise money for epilepsy and has an active social network tied into the site.