Epilepsy myths and facts

[Loopy Lou]

I decided that its probably about time I started spreading some awareness, so I'm going to start posting some facts, myths (and corrections) etc on my Facebook status'. I have quite a few written down but thought that here would be the best place to ask. I certainly don't want to get any detail wrong.

What kind of assumptions, myths and inaccuracies would you say are common and possibly mildly annoying, that you wouldn't mind people knowing the truth about?

[BlueSkies2220]

The myth that people think of the most is putting something in someone's mouth so that they dont 'swallow their tongue' ... which is medically impossible [otherwise you'd swallow yours every night that you sleep, lol]. With this ive heard suggestions on all kinds of things to put in people's mouths, like a wallet..a wooden spoon, and even someone's hand.

The fact is, the person having the seizure should be laid on their side so that their airway can drain and so that the person does not aspirate [choke] on saliva or vomit...

Another myth that really, really bothers me has to do with epilepsy and intelligence. Epilepsy is NOT a mental disease, its not a mental illness..its an neurological condition, and while it can lead to depression for some, i guess anyone would be depressed if they had seizures every day.

[Nakamova]

CWE member Phyllis has put together this list of myths:
http://epilepsytalk.com/2009/09/08/e...ive-on…/

[Loopy Lou]

Phyllis does have a pretty good list there I wonder if she'd mind if I use some.

One of my pet annoyances is that people assume that because a seizure is "only" an absence or a partial, they don't matter. They can still cause me to be confused, tired or injure myself.

Or that all people with epilepsy are photosensitive.

[Junebug]

I've been posting some facts on my facebook page everyday in november for epilepsy awareness month. Here are the 7 that I have so far.

November is Epilepsy Awareness month.

Epilepsy fact of the day #1 Did you know that epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

Epilepsy fact #2
Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.

Epilepsy fact of the day #3 - Famous people with epilepsy include Julius Caesar, Socrates, Alexander the Great, Tchaikovsky, Van Gogh, Dostoyevski, Dickens, Dante, da Vinci, Mozart and Alfred Nobel.

Epilepsy fact #4 of the day:
Did you know that seizure response dogs are a special type of service dog, specifically trained to help someone who has epilepsy or a seizure disorder.

Due to the differing needs between each case, every potential seizure dog receives specialized training. Tasks for seizure dogs may include, but are not limited to:
~Summoning help, either by finding another person or activating a medical alert or pre-programmed phone
~Pulling potentially dangerous objects away from the person's body
"Blocking" to keep individuals with absence seizures and complex partial seizures from walking into obstacles, streets, and other dangerous areas that can result in bodily injury or death
~Attempting to arouse the unconscious handler during or after a seizure
~Providing physical support (and the secondary benefit of emotional support, although this is not legally considered a task.)
~Carrying information regarding the dog, the handler's medical condition, instructions for first responders emergency medication and oxygen

Additionally, some dogs may develop the ability to sense an impending seizure. This behavior is usually reported to have arisen spontaneously and developed over a period of time.

Epilepsy fact of the day #5: Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

Epilepsy fact #6: Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.


Epilepsy fact of the day #7: For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

I also have posted this PSA that I found on youtube

http://www.facebook.com/l.php?u=http...Kh03mWpBN3KFsw

[Junebug]

Also this is from the link that Nakamova posted.

http://epilepsytalk.com/2011/10/19/c...areness-month/

[Brent]

For me:

Myth #1:
Because I have a service dog, I am happy to talk to you at length about my medical condition, and it is not the least bit rude of you to ask.

Fact: I don't like most people, and having epilepsy doesn't make me any less selective about who I chose to talk to.

Myth #2:
Because I have seizures, I wouldn't be interested in ______ for fear of having a seizure.

Fact: I had a sense of adventure long before I had seizures. Having a seizure while rock-climbing scares me much less than contemplating a life of missed opportunities.

Myth #3:
I can come up with three myths that haven't been mentioned before.

Fact: I can only think of those two.

[Aubrey]

The myth that people think of the most is putting something in someone's mouth so that they dont 'swallow their tongue' ... which is medically impossible [otherwise you'd swallow yours every night that you sleep, lol]. With this ive heard suggestions on all kinds of things to put in people's mouths, like a wallet..a wooden spoon, and even someone's hand.
.

I know this. You know this. I am terrified of having a seizure around my friend's husband because I have told him this over and over and he has this one so firmly planted in his head it is not even funny... I even told him if I he ever tried that with me, as soon as I was conscious enough I would sue his -ss!

Hey Brent, why do you take your dog almost everywhere you go?

[Cint]

Another "myth" that I have often heard when I tell some folks I have epilepsy is, "you don't look like you have epilepsy." I feel like replying to them, "Well, you don't look stupid, either." What the H**L do looks have to do with a brain disorder?

I also have Type 1 diabetes, so what is a "diabetic" supposed to "look" like?

[Brent]

Hey Brent, why do you take your dog almost everywhere you go?

She's a seizure alert dog.

[BlueSkies2220]

I really do think that a lot of these myths that we have been confronted with in life come from people's general ignorance about a disease that has been kept behind closed doors for SO long. Its a shame, really...But now things are different..

I feel that its really been since the 80s that people started learning what this condition is about. So, its only been about 30 years since its been in the 'public' [so to speak]. I feel sorry for earlier generations that had to suffer in silence. I feel great for us because we have a chance to educate the public and to change public perception about this condition.