Community Corner: Advocates Unite!

What a great time for epilepsy awareness! I’m hearing about epilepsy a lot more now in the news. Sure, no one wants to have epilepsy. But if you or a loved one has seizures, you should be able to talk about it openly. You should not have to feel afraid of saying the word “epilepsy” or of being labeled as being “different.” Both “good” and “bad” news draws attention and helps people become more aware of what epilepsy is, and what it is not. Consider a few things that are being talked about recently.

• North Korea changes the name of epilepsy to cerebral electric disorder. They feel that the stigma of epilepsy was too great so they changed the name! Do you agree? Were there other ways of dealing with this? Probably. Yet, by acknowledging the stigma of epilepsy, they took steps to eliminate it and raise awareness. NPR is talking about it with Dr. Joseph Sirven this week! Think about all the people who will tune in and hear about epilepsy now.

• The Epilepsy Foundation calls for access and research on medical marijuana for epilepsy.

• Advances in epilepsy research continue to be published every month in professional journals. For example, identifying new genes for some of the devastating forms of epilepsy or treating people who have difficult to treat status epilepticus with the ketogenic diet! Who would have thought this would work or would have tried this years ago?

• Rick Harrison of “Pawn Stars” talks about epilepsy and will be attending the National Walk for Epilepsy in Washington DC on March 22nd. If you are a Pawn Star fan, you’ll realize how important a step this is! If you aren’t a fan yet, you are sure to be one soon!

• And, most importantly, you – people with epilepsy, families and friends – are spreading the word about epilepsy day in and day out. I love looking around social media to see people spreading the news about the Epilepsy Walk, preparing to convene in Washington, DC, or setting up walks or other events in their own communities. Each time someone talks about epilepsy, uses our social media hashtag #EpilepsyWalk, or shares a post, news article or event, they are helping to raise awareness and work to end the stigma about epilepsy.

So, thanks to everyone who is talking about it and advocating for epilepsy. Let’s continue to unite – keep the momentum going each and every day!

I look forward to seeing you in Washington, DC. If you haven’t joined yet, there’s still time! If you can’t make it to DC, can you support a team virtually?

• www.walkforepilepsy.org

Best wishes for a safe, and talkative, week!