Updated: Apr 5, 2019
Throughout the month of March, here at Epilepsy Positivity we have been running our ‘#BeyondTheSeizures Campaign’ on our Instagram. This campaign aimed to raise awareness that Epilepsy can impact lives in a variety of ways, beyond the seizures. Each day we took on a different letter (A-Z) right up until Epilepsy Awareness Day, March 26th.
We are passionate about ensuring our campaigns reflect what is important and relevant to our followers. Thus, we wanted to make sure our online community was involved with this campaign right from the planning stages. Throughout January and February we gathered feedback from our followers for the proposed structure and content of the campaign and welcomed people to share their experiences of how epilepsy has impacted their lives. Our volunteer team, made up of Campaign Assistants and members of the Epilepsy Positivity Advisory Group, were especially involved with compiling the list of A - Z impacts, as well as creating and promoting some of the resources used throughout the campaign.
Here is a small video clip we have put together showing the posts which went up each day (we also would like to note that everyone has different experiences with epilepsy and these impacts may not apply to everyone!):
Since launching the campaign, it has been wonderful to see so much interest and engagement from our followers on Instagram. Each day we have been thrilled to see so many individuals connecting over shared experiences, as well as other members of the public who are not directly affected by epilepsy showing an interest.
Here are a handful of our favourite responses to the campaign:
“Just wanted to express my gratitude for the amount of visibility and assistance this page brings to the epilepsy community. Keep it up, we’re stronger together.”
“Wow. I’ve experienced every single one.”
“This is SO ME.”
“Must say I love this alphabet thing you’re doing. Made me realise all the things I’ve had to deal with besides the seizures and realise the amount of people so similar to me. Epilepsy is more than just seizures! It’s wayyy more than that x”
“I didn’t know too much about epilepsy before. This whole campaign has been totally eye-opening. Thank you.”
“What a wonderful way to share what we go through. Thank you for posting this list!!!”
Astonishingly, here are all of the additional impacts which were suggested by Instagram users (highlighting how wide-ranging the impacts of epilepsy can be):
Anger, Aggression, Apathy, Afraid, Adaptable, Dogs, Doubt, Emotions, Eye problems/movements, Falls, Forgetfulness, Fight vs. Flight, Goals, Grace, Geschwind syndrome, Gingival hyperplasia, Heaviness, Harassment, Hurting, Hallucinations, Hopelessness/Helplessness, Hypercritical, Horror, Hurting, Insomnia, Judged, Jealousy, Juggling everything with health, Lethargy, Missing out, Miscommunication, Mockery, Migraines, Muscle spasms, Missed moments, Nervousness, Numbness, Noise sensitive, Nightmares, Neck pains, Outcast, On edge, Outraged, Paranoia, Protective, Quarrelling, Queasiness, Rage, Restrictions, Rest, Rough roads, Sleepless nights, Scars, Stubbornness, Sadness, Status epilepticus, Twitchiness, Tastebuds, Unpredictable, Underestimated, Unanswered questions, Unstable, Undercover, Unresponsive, Unconsciousness, Uneasy, Unfamiliar, Uncertainty, Wandering, Worry.
We want to give a special thanks to the following volunteers for their contributions throughout the project: Kumar Anand, Marie Pepe, Marika Lopez, Natalie Cruz, Samantha Kestler and Stephanie Hanlon (photographed below).
Thanks again to all who have been involved.
We hope to run many more #EpilepsyAwareness campaigns in the future!