Understanding Photosensitive Epilepsy

By Lorrie Forseth

1 min read

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.

Spreading awareness!

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
Understanding Photosensitivity

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Lorrie Forseth Member
Hi Julie , my daughter is doing well , thank uou for asking . The safety around photosensitivity is constant , we steer away from movie theaters, sporting events , concerts etc , due to the possible seizure triggers of flashing , strobe, pyrotechnics etc as there are no pre warning signs. Movie screens flicking can be a seizure trigger for her . We try to concentrate on what she can do . But at times it's disappointing that she must miss out on fun events. We are still very careful online as you just done kniw if anyone will attempt to send a flashing gif her way . Not everyone's seizure triggers responses or warnings are the same, my daughter's seizures are around her eyes on cheek and lips at times . We don't worry as much as we used to but are now more cautious and try to remain aware at all times. We are careful around youtube , Nintendo Switch etc . I've noticed on social media, photosensitivity is not talked about as much . Hopefully one day , more people around the world will advocate for more photosensitivity awareness. That's my one of many caregiver goals .
1. Julie.Byers Community Admin
 <inline-mention username="Lorrie Forseth" user-id="4281207"/> I’m glad to hear she’s doing well! You have done a great job identifying potential triggers and staying vigilant. You’re truly making such a difference for your daughter through your continued advocacy. Hopefully more attention and awareness will be brought to this💕. All my best, Julie (team member)
2. Lorrie Forseth Member
 Hi <inline-mention username="Julie.Byers" user-id="7004743"/> , thank you for your kind words . My goal right now is to investigate and raise awareness around digital billboard ads at sporting events and in malls , on buildings etc . , I was reading somewhere that digital ads at NHL hockey games have become a issue for some with Epilepsy. I may write a story about it . I'm not sure yet because my daughter has never said if it affected her . But maybe the story will help another , kind of like a " survival guide " . One day I would love to write a book, but I have no idea how to get started so I'll stick with stories for now .
Julie.Byers Community Admin
<inline-mention username="Lorrie Forseth" user-id="4281207"/> thank you for sharing your daughter’s story and raising awareness about photosensitivity! How has your daughter been doing lately? Sending well wishes, Julie (team member)