Understanding Photosensitive Epilepsy
Last updated: November 2023
You may wonder why I ask you to help raise awareness when you or your loved one might not have epilepsy, well at one point my daughter Melody didn't either, she was diagnosed at age 8 after having 2 seizures.
Melody's diagnosis of photosensitive epilepsy
Melody was re-diagnosed in her early teens after attending a school dance, the flashing lights caught her eyes the wrong way, causing her to have a seizure at the dance, her friend and their dad brought her home. After having an EEG and other tests, it was determined that Melody was also photosensitive.
Everyone's journey is different
Did you know that it's estimated that around 1 in 100 people has epilepsy and of these people, up to 5% have photosensitive epilepsy?1 Each person is affected differently depending on the sensitivity level of that person and the intensity of each flashing images, this can include all social media platforms, gaming, movie theaters, flickering screens, TV shows, concerts, sporting events and more. Imagine if there was more possible seizure trigger warnings in advance?
We were never told about photosensitivity until after our daughter had a seizure due to the dance flashing lights. Why aren't there more warnings from neurologists in advance? I remember going to a movie theater with both daughters and Melody came out of the theater afterwards to only have a seizure due to the flickering of the movie screen. If you're in a moving vehicle and the sun is shinning through the trees, that can also act as a strobe light and could possibly trigger a seizure. It is also important to note that not everyone who experiences seizures are photosensitive.
More awareness about photosensitivity is needed, I've noticed big epilepsy platforms don't talk about it, how will others know if we are silent? My hope is that one day, photosensitive epilepsy will be taken more seriously by media, social media, and event outlets worldwide. For now, we must continue to advocate for seizure safety!
Thanks for listening epilepsy community!
Signed Lorrie Forseth | Momvocate & writer
Is increased screen time a seizure trigger for you?