Resource Center

Blog

Seizure Clusters Connect Reflects on 2016 – and Looks Forward to the Year Ahead

Doctor and Patient Talk

As the New Year approaches, many of us are reflecting on 2016 with the hopes of making 2017 an even better year. Seizure Clusters Connect (SCC) thought we would do the same by sharing what we’ve learned from the members of our Facebook community in 2016 and by getting your input for the year ahead.

Not surprisingly, members have told us time and again that epilepsy/seizure clusters make life incredibly difficult for the person experiencing them and their loved ones. One of our most commented-upon posts of the year read: “You don’t really know how long 30 seconds is — until someone you love has a seizure.” Community member Karen S. echoed this sentiment, writing “It’s painful to watch. You can’t help them until it’s over,” while several other members simply said, “It feels like forever.” Robin W. added this perspective: “You don’t really know how long an hour is until you have a seizure and then wake up not knowing where you are, what’s going on, or even who the people around you are.” Many of our community members also noted that seizures can last for minutes, not seconds.

Yet SCC is a community of hope, and we see that hope shine through in your comments, likes and shares, such as the ever-popular post: “I may be 1 in 26 but I am also one in a million.” Many of you also liked our “letters” to epilepsy, especially the one that ended, “Just because you are in my life does not mean you own my life.” The fighting spirit of the SCC community was perhaps best summed up by Austin C., who wrote, “I’m not going to give up or go away. I’m going to continue to fight [epilepsy] until my last breath.”

For our part, we hope we have helped you this past year by:

  • Providing facts about epilepsy, seizure clusters, and related health issues
  • Encouraging healthy habits
  • Sharing information about seizure triggers and response
  • Linking to tools for monitoring seizure activity and for creating seizure emergency plans
  • Posting information from other oganizations about events, research and the fight for a cure
  • Helping to keep you inspired and on track

This last point is especially important, because YOU inspire US every day, whether you are living your life to the fullest, despite seizures, staying strong for your loved one with epilepsy, or just speaking out in support of people affected by this invisible, devastating disorder. You are our heroes, and we want to help.

And so we ask: What else would you like to see – or see more of – on the SCC Facebook page? Do you prefer inspirational or informational posts? Should we shout out louder for more compassion – or for a cure? Link to more events? Dispel myths about epilepsy? All of the above?

We want to amplify your voice. Please share your feedback by commenting to this blog post on our Seizure Clusters Connect Facebook page or via email at seizuerclustersconnect@gmail.com.

Seizure Clusters Connect wishes you and yours a very Happy and Healthy New Year!

 

December 14, 2016 | Categories: General

Back to Blog List

Be part of the community—sign up!

Join us—and receive information about seizure clusters and helpful resources. We'll let you know about community news and events, too. When you sign up, we'll send you A Community of Support, our brochure about seizure clusters.

Sign Up Now