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I was honored to have a chance to talk with Greg Grunberg (star of the NBC show Heroes) last week about his work to bring more awareness and understanding to epilepsy. Greg, whose son Jake was diagnosed with epilepsy at age 7, went to the nation's capital last week for Saturday's National Walk for Epilepsy. He also met with members of Congress, including Rep. Ed Perlmutter of Colorado (who has a daughter with epilepsy) about bringing more awareness to this disease.
Greg told me that just before his son's 7th birthday he began having (what he thought were) staring spells. At first, Greg and his wife just thought their son was daydreaming, but during his annual check-up the pediatrician discovered that Jake was actually having seizures.
Even though the diagnosis of epilepsy was scary for Greg and his wife, they were determined to find out everything they could and get their son the best possible treatment. Like many parents, they turned to the internet for answers but what they found was that there was no one-size-fits-all treatment, because there isn't any one-size-fits-all type of seizure. Greg told me that every seizure is different, and every patient responds differently to medication. Unfortunately, Jake has been found to be in the 25 percent of children that have seizures which are more difficult to treat. At the age of 13, Jake has already been on many different medications, tried many different treatments, and has even had surgery.
One thing that Greg says he wished he knew earlier on in his son's diagnosis, was that there is a type of neurologist (known as an epileptologist) who specializes in the treatment of epilepsy. For this reason, Greg's message to parents with a child suffering from uncontrolled seizures is "don't settle". He wants parents to seek out a specialist and not to settle for anything less than seizure-free (or at least as close to seizure-free as possible).
To help parents (as well as friends and family) of children with epilepsy, Greg has come together with some of his friends in the entertainment world and he's created an interactive website to bring more awareness to this disease - TalkAboutIt.org. He also has a Ning community where anyone can go to get information and Talk About It.
Greg says that Jake is his hero... Jake is not 100% seizure-free yet, and Greg will not stop fighting until he finds the treatment that gets him there. Until then, Greg wants to educate people and reduce the stigma associated with this disease. One of the most important things he wants people to know is what to do if someone having a seizure.
- First, try to make sure the person doesn't fall and become injured.
- Second, turn the person on their side and don't try to hold them down.
- Third, never put anything in the person's mouth...It's NOT true that a person having a seizure can choke on their tongue.
Usually the seizure will not last long and because a seizure happens in the brain, when people come out of seizures, they are often confused, upset or even angry...Just being with someone and talking to them after the seizure is very important.
One of the last questions I asked was about the recently passed health care reform bill...
Greg said he is "very happy" about it. He is very happy that Jake will be able to stay on his insurance until he is 26, and that he won't be discriminated against due to his pre-existing condition.
It was wonderful to have the opportunity to talk to Greg Grunberg about his son and his work to bring more awareness to epilepsy. It was clear from the beginning of our interview how incredibly passionate he is about this important topic, as well as how proud he is of his son. Even though the National Walk for Epilepsy is over, it's not too late to donate to the cause. This is from Jake's donation page, his team is called Jake's Crazy Brainwaves...
Hi everyone! My name is Jake Grunberg. I want all of you to join me in Washington, DC to help end epilepsy's stigma, because stigma stinks... I know.
Even
