We fight to improve the lives
of everyone affected by epilepsy

Amy-Jo Griffin

I was diagnosed with temporal lobe epilepsy 11 years ago after a head injury and I am now petitioning for strobe light warnings to be made a legal requirement - please click the link and sign below this story!

Though I do not have photosensitive epilepsy, flashing lights of any kind give me migraines, confusion and disorientation and the repercussions for those who do have it could be dire. My seizures are a mix of grand mals and absences, though I have not had a grand mal for 4 years. Lamotrogine controls my epilepsy but I still do suffer with absences every now and then and the triggers could be anything from stress or doing too much at once. As epileptics will know, describing an absence is so hard and they're petrifying when happening. Mine start with a warm sensation on the left hand side of my head and spreads though my body. I will then have feelings of fear, anger, anxiety, euphoria, deja vu, hallucinations or memories that night not even be real - with all of this happening at once I get very hot and bothered, and my face gets very flushed. The most upsetting thing about being diagnosed was not being able to drive for 10 years and being told that I can never attend theme parks again.

The reason for my petition is off the back of an incident that happened in December 2017 where I had to leave a social gathering due to the use of strobe lights which was not mentioned anywhere in the time of booking. This really showed that epilepsy is heavily overlooked and forgotten about; if most places cater for disabled access and highlight nut allergies - why can't they remember us? We shouldn't have to go out of our way to ask about them, there should be enough awareness by now that strobes and epilepsy do not go well together. What surprises me most is that even though photosensitive epilepsy is the rarest form, it is the only one that most people have heard of - where are the signs if this is the case? Warnings could save a life and it is also a safeguard for the company to avoid fines and potential legal consequences.


Amy-Jo Griffin
Add your story