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YouTube Videos of Seizures

Mon, 01/18/2010 - 08:33

Someone may have already raised this topic but, if so, I did not find it.

I was distressed to read an old report in Metro.co.uk about  videos of seizures appearing on YouTube.  http://www.metro.co.uk/news/148242-youtube-s-freak-show-videos-of-epileptic-fits

The report likened the videos to old-fashioned freak shows.

Maybe people want to laugh at epilepsy because they are afraid of it.  Maybe they are genuinely curious to know what a seizure looks like.  Or maybe too much reality television has numbed them into insensitive louts.

But, you know, if I had a seizure on the train, it would be the easiest thing in the world for one of those louts to film it on their cell phone and post it on YouTube.  According to the article, YouTube encourages people to flag videos that invade their privacy.  But if a video of me having a seizure appeared on YouTube I would not know because I don't go there.

First of all, I think that YouTube should not allow anyone to post a video with a tag like "seizure," "fit," or "epileptic."

Second, I think that people with seizure disorders and their loved ones can act as a group.  Any video that mocks seizures invades MY privacy.  I can flag it.  And so can we all.  Even if we don't know the person having the seizure.  If you see a video of me having a seizure, I hope you WILL flag it.

Can we discuss doing that?

 

Comments

Re: YouTube Videos of Seizures

Submitted by pellykate on Mon, 2010-03-22 - 18:21
People seeing someone having a seizure out in public may react differently to someone surfing YouTube for something to make fun of. Yes, and that sucks. That said, When I first suspected epilepsy as an explanation for some of the weirdness going on with me, YouTube was one of the first places I looked, after, of course, here. I had never witnessed any type of real seizure, only dramatizations on TV, and those were just the full-tilt-boogie gran mal variety. I needed to see if what my body was doing could possibly be classified as a seizure, and also to compare what I had felt (that may have been a big one before sleep) to anything I may see. You know how you watch something and say, "I know what that feels like..." Also it was helpful when I searched for "child sleep seizure" because of an incident with my son at night. There were a couple of videos that were almost identical to what he did. So now I feel more confident that when I hear noises from his room I need to check rather than assume it's normal sleep behavior and nothing. The serious videos posted with the subject's consent are beneficial in such cases as mine. Filming someone having a medical emergency without their consent, in public or not, and displaying it in an environment that is prone to ridicule and insensitivity, is wrong. It may be legal, but that doesn't make it right.

Re: YouTube Videos of Seizures

Submitted by George R on Thu, 2011-04-14 - 21:31
In recent years I've seen more and more fictional stories, whether on TV or in the theater, at least mention epilepsy or include someone in the cast who has it. In all cases I've witnessed, no fun has been made of him or her. Let's get realistic. If the public could see a "proper" definition and example of what many of us live with physically and socially, fewer sly comments just might be made. I've been interviewed several times on TV, just describing the fact that I have epilepsy and what my challenges have been over the years. And yes, my full name has been used. But to make fun of it--or me--would be just improper. Even by me!

I've had epilepsy since

Submitted by richard paul on Sat, 2018-09-29 - 18:33
I've had epilepsy since before my teens and am now over 46. I'm married with four lovely daughters, have had fancy jobs, such as Design Manager at Oxford University Press, and am allowed to drive.This got me worried because i have a bright future that i do not want epilepsy to become a hindrance, i tried several doctors in Texas and none could help with an effective cure. I went on the internet and saw testimonies about a treatment for epilepsy which a doctor offered and i was interested, i got in contact with him and i was able to get the medicine for my self which i used for 2 months as he instructed and it has been over 5 months now i am doing fine without any allergies or aftermath effects. If you are suffering problem try to reach him too on via drlewishill247 @ gmail. com

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