Teaching about photosensitive and “regular” epilepsy together: 1+1=3Posted: 04/17/2012
The American epilepsy community makes information available on photosensitive seizures but in general doesn’t go out of its way to advocate for protecting consumers from visual media that can provoke seizures. Our epilepsy community doesn’t want to want to call too much attention to the risk of seizures from brightly flashing, visually overstimulating products and experiences. The priorities for public education and advocacy don’t include teaching the public about why video games contain those warnings.
But everybody wins–the “mainstream” epilepsy population, those with exclusively photosensitive seizures, and members of the public with a need to know–when epilepsy public education campaigns raise awareness of both types of epilepsy, in the context of the other.
Epilepsy doesn’t deserve its stigma and the notion that it’s an affliction exclusively of the seriously disabled. Raising awareness of epilepsy as a spectrum of seizure disorders that includes visually triggered seizures in otherwise healthy individuals could help engage the public and change misperceptions. And, much-needed photosensitivity education and advocacy can be most effectively delivered by established, well respected epilepsy organizations, as part of an overall public education program.
Here’s how I envision this:
- Part of photosensitivity education is making people aware they could already be having visually induced seizures they have never identified. People who learn about subtle, undetected seizures experienced with or without a visual trigger can seek medical assessment and treatment. People with undetected photosensitive seizures might come to understand the source of their unexplained symptoms during or shortly after being exposed to video games, TV, music videos, and other visual media.
- Those with no history of seizures and no idea they might be photosensitive would realize they should be mindful of unusual sensations and actions while exposed to lots of flash and pattern motion. Parents would be more vigilant about observing their children who are engaged in screen-based activities, and about asking them about possible symptoms of subtle seizures.
- Doctors would routinely inquire about patients’ exposure to visual media and about any unusual aftereffects, and they would recognize from patient histories when suspicion of photosensitivity is warranted.
- People who learn they have photosensitive epilepsy would know how to protect themselves and their families from triggering stimuli–through avoidance, the use of dark glasses, and limiting problem images to a small portion of the viewing field.
- The isolation and stigma endured by those with “regular” epilepsy will ease when people learn that seizures are a common disorder. The general public will understand that seizures are experienced by a broad spectrum of individuals, some who have other disabilities as well, and many who don’t. Some have seizures provoked by visual triggers, and others have seizures due to other, often unknown, triggers.
- On the strength of the advocacy of well-established epilepsy organizations, public health policy makers will become aware of the need for greater consumer protections, such as those in the UK, that require or encourage games, TV, online content, and movies to meet international guidelines for seizure-safe visual media. None of this is even under discussion in the US.
I’ve considered things from both the typical epilepsy and the exclusively-photosensitive-seizures perspectives. After discovering my daughter’s photosensitivity, we saw dramatic gains in her health and functioning after she gave up video games, her main visual trigger. But her wellness didn’t last and she went on to develop “regular” epilepsy. Daily life today is affected by unpredictable seizures and by the need to always be vigilant for visual triggers in the environment. I believe people with mainstream epilepsy–and the general public–have a tendency to assume that reflex seizures are simple to prevent and therefore the disorder is less burdensome than spontaneous seizures.
I wrote an editorial proposing that photosensitivity play a central role in a new type of awareness campaign about epilepsy. You can read “A Different Public Education Campaign” in this week’s epilepsy.com Spotlight newsletter, where I’m addressing the mainstream epilepsy community, and making the case for bringing photosensitivity under the epilepsy awareness umbrella, as it were.