Anyone with epilepsy or who has epilepsy in the family will often tell you that the greatest support and comfort comes from talking to other people who share their own epilepsy experience. There is a growing community of people called Epilepsy Advocates who share their own stories, experience with different treatment options and offer invaluable support to other epilepsy sufferers and their families.
Actor Greg Grunberg is one of those epilepsy advocates. The Heroes star, who plays Matt Parkman, a policeman who can hear and control other people’s thoughts, is father to 12 year old Jake who’s had seizures from the age of 7. Greg openly talks about the shock he and his wife Elizabeth felt when they discovered the oldest of their three boys was suffering from epilepsy. They felt powerless and out of control and through their own research discovered epilepsyadvocate.com, a growing community of epilepsy sufferers and their caregivers who provide much needed support and information.
Greg believes that through talking to other epilepsy sufferers and doing his own research he was able to feel empowered. He no longer felt out of control and unable to do anything for his son. Greg decided he wanted to become an epilepsy advocate and share son Jake’s story so that he too could help other families who have been newly diagnosed as well as helping to raise epilepsy awareness. His dream would be to break down the stigma attached to epilepsy and increase the public’s knowledge of seizures so that one day a cure can be found.
Sharing Your Story
Epilepsy advocates are people who live with epilepsy, either suffering from seizures themselves or providing care and support for someone who does. Each advocate has made a personal commitment to share their story in the hope that they can provide information, insight and support as well as inspiration to others that suffer from seizures. Their overriding message is that epilepsy is just something that you have, but it doesn’t define who you are.
In sharing his family’s story, Greg Grunberg describes how they deal with 12 year old Jake’s seizures. Their family motto is that they all have epilepsy, because they deal with it as a family. Even his four year old son knows how to recognise a seizure. They work together, using humour on a daily basis to face Jake’s condition, always mindful not to let epilepsy define who he is.
By sharing their stories, epilepsy advocates hope to bring something positive to the lives of other sufferers as well as raising public awareness of the condition. As Greg Grunberg says, we are now reaching a tipping point, and the more people talk about epilepsy, the more likely we are to reduce the stigma attached to it. By sharing your epilepsy story, you could help to raise the volume on awareness. That’s the motto of Epilepsy Advocate, that everyone’s “voice has power” and that everyone can be part of this growing community.