November is Epilepsy Awareness month & after a conversation I overheard when we were at the Mall of America last weekend I realized how much people still do not understand about Epilepsy so I have at least a few posts planned in hopes of educating people about Epilepsy!
Emeric, Kaydence and I(Jake and Kylie were on another ride) were standing in line for a Ghostbusters ride and there was a sign on the door that said, "Warning, strobe lights are used on this ride" and I overheard two women in front of me talking and the conversation went like this:
Person 1: I wonder why they put a warning about strobe lights being used?
Person 2: Oh, it's because people with Epilepsy have seizures if they look at flashing lights. You can't even use a flash around a person with Epilepsy or they'll have a seizure. They'll start going like this(and then she demonstrates someone convulsing).
They continued their conversation for a couple minutes while the lady told her(wrongly) that all people with Epilepsy will have a convulsive seizure if they see any flashing lights.
I thought for a second about tapping her on the shoulder and telling her that only people with photosensitive Epilepsy have a seizure when they see flashing lights but I figured it wasn't really the place. LOL These women were at least in their 40's though and it made me realize how many people really don't know much about Epilepsy.
A lot of people that think of seizures picture a tonic clonic seizure where the person is stiff and convulsing but that actually is not the most common type of seizure.
So... with that said I hope that some of you will be willing to ask questions and come back to learn more about Epilepsy!
Sunday, November 1, 2009
Epilepsy Awareness Month
Posted by Nicole at 4:39 PM
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5 comments:
Well I learned something. I had no idea there were warning labels on strobe lights or that they could cause a seizure. Do photosensitive epileptics have a seizure every time they see a strobe light or is it just a common occurrence so that should avoid them? I suppose with all epilepsy the severity is individual to the person.
i didn't know a lot about epilepsy and i STILL don't know a lot! thanks for explaining the slowing and sharp waves from ry's EEG for me... less to google! :-)
ah... i look forward to educating myself through your blog!
Miranda,
A person with photosensitive Epilepsy won't necessarily always have a seizure but most often. It wouldn't be just through a strobe light, some have them simply by turning a light on, flashing lights, going from a light to dark room, etc....
I know a little boy who has a seizure everytime his parents turn on the light. Emeric had one once from turning on a light and I was so worried that lights would end up being one of his triggers but thankfully it wasn't!
If you look on many video games there are warnings for people with Epilepsy because there might be flashing lights that could provoke a seizure.
Until Matthew was diagnosed with epilepsy, I didn't know much about it either. I didn't know about atonic, myoclonic, clonic, and absence seizures. I didn't know about MRI's and EEG's. I didn't know about Depakote, Lamictal, Felbatol. I didn't know so many things and now I wish I didn't *have* to know about them.
I still think of you and Emeric often. I hope the Felbatol is helping him. It has done wonderful things for Matthew!
Cristina,
I didn't know anything about Epilepsy either really and like you, I wish I wouldn't have learned so much about it by having to go through it either.
The Felbamate seems to be working well so far but it's probably too soon to tell since we're not fully off the Topamax.
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