Epilepsy Awareness Month

[tinasmom]

November is Epilepsy Awareness month and we will be releasing purple balloons on November 1st. We will release one in memory of Tina and one in honor of Nicole. Let's see how far around the world we can get people to do this with us.

[Rhea]

We have an epilepsy awareness walk/stroll scheduled for Nov. 7 in our area. It looks like it should be really informative and fun!!!

[BuckeyeFan]

I really like the purple balloons. Maybe if 100 were released over a festival or some other large gathering if it would raise people's interest enough to at least ask questions and try to understand.

Can we paint the world purple in November. The October pink has been a great success.

[tinasmom]

This is exactly why we have to tell as many people as possible and try to get groups to release them together. By the way, Wisconsin now holds the world record for the largest pumpkin.

[Rae1889]

I don't wanna sound rude or bitter, but the October pink month really ticked me off.

I busted my butt off last year contacting anyone and everyone to try and raise awareness in our city and got not one response. Not even an automated email. Including from the epilepsy foundation. It just bugged me that I put all that effort into it, writing an article that the paper said they would publish and didn't. And breast cancer got all the attention. I wanna know why its so easy to market breast cancer? Is it just because its pink? Cuz its the only time some guys will wear it? Ugh...

It bugs me most because with breast cancer, there are 2 options, you go into remission, or you pass away. Which means you will at least be cancer free. With epilepsy, there is no clear cut option and there is no for sure answer. You could live 80 years with it and suffer everyday and nobody wants to listen to those of us trying to raise awareness. Its so not fair.

That's my rant lpl. I'm trying to make sure I can wear purple all month.

[Endless]

Kudos to you for trying to get the word out there!

I agree. It's hard to generate some buzz about epilepsy.

Breast cancer affects about 135 in 100,000 people. The death rate is about 24 in 100,000 (2.4%). Epilepsy affects 1000 in 100,000 people (about 1%). The death rate from epilepsy in in the general population is about 8 in 100,000, or .08%.

http://emedicine.medscape.com/article/1186635-overview

The mortality from breast cancer is about 2.5 times higher than epilepsy. But several articles said that recording epilepsy as the cause of death is rarely done. Usually only when it is related to Sudden Unexplained Death in Epilepsy or status epilepticus. Sudden Unexplained Death in Epilepsy is only one cause of death for people with epilepsy. It doesn't include the people who fall and hit their head in the shower, drown, drive their car into a tree, overdose on medication, etc. So the death rate for epilepsy may be much higher than is currently reported.

So epilepsy affects more people than Breast Cancer, but fewer people die from epilepsy. But things with much less of a mortality rate gets tons of publicity - like autism.

IMHO, Epilepsy is still a taboo subject. When I try to describe what temporal lobe epilepsy to anyone, including extened family, They just think I'm nuts. Many people equate epilepsy with mental illness. But even mental illnesses like depression are talked about. Why not epilepsy?

[BuckeyeFan]

Some days it seems like it is the last thing still in the proverbial closet.

[Rae1889]

Okay guys, I just decided to take another route with this. I started a facebook event. It worked so well with getting people to wear purple in memory of the people in the gay community who were bullied into suicide. So why not with epilepsy?

So do me a favour. click on the link below, and click attending. then send it to all your friends and ask them to do the same. in the personal message box i put "Every single person that I have sent this invitation to has at least one connection to Epilepsy...Me. So clicking the attending button would really be appreciated and help my cause. love and hugs!"
Lets see if we can get 100,000 people or more by the end of November. So help me help us, and invite everyone you know!
(P.S. my facebook name is Rae Metcalfe if you want to add me as a friend so I can invite you personally if you cant find it!!!)
http://www.facebook.com/event.php?ei...vent_invites=0

[tinasmom]

Rae -

I understand how you feel because even the NFL recognizes Breast Cancer by wearing pink. I have written to the NFL asking that they recognize Epilepsy Awareness Month by wearing purple as there are football players who have publicly admitted that they have Epilepsy. I think the problem is that people are so afraid of Epilepsy and still do not understand it and this is why we need to keep telling people and do things to make people aware. I was very ignorant about E until my daughter died from Sudden Unexplained Death in Epilepsy. I thought that if you just took your meds everything would be ok. I have educated myself through the internet and sites such as this one so now I work hard to help make people aware of E. So, as frustrating as it gets we just need to keep sending articles to the newspapers and talking to everyone as it is my dream that someday E will be as well known as Breast Cancer.

[Cint]

It's hard to generate some buzz about epilepsy.

But several articles said that recording epilepsy as the cause of death is rarely done. Usually only when it is related to Sudden Unexplained Death in Epilepsy or status epilepticus. Sudden Unexplained Death in Epilepsy is only one cause of death for people with epilepsy. It doesn't include the people who fall and hit their head in the shower, drown, drive their car into a tree, overdose on medication, etc. So the death rate for epilepsy may be much higher than is currently reported.


IMHO, Epilepsy is still a taboo subject. When I try to describe what temporal lobe epilepsy to anyone, including extened family, They just think I'm nuts. Many people equate epilepsy with mental illness. But even mental illnesses like depression are talked about. Why not epilepsy?

Maybe that is because some with Temporal Lobe Epilepsy are the ones ashamed and embarrassed to talk about it. As I have stated many times, I was severely burned while on my way out of the shower from suffering a tonic clonic seizure. I have ugly burn scars on my arm and back and when people have the guts to ask how I was burned, I have the guts to talk about it. I tell them I have had tonic clonic, complex partial seizures, brain surgery and the VNS, and most of the time that leaves them speechless.

Originally Posted by tinasmom

I think the problem is that people are so afraid of Epilepsy and still do not understand it and this is why we need to keep telling people and do things to make people aware. I was very ignorant about E until my daughter died from Sudden Unexplained Death in Epilepsy. I thought that if you just took your meds everything would be ok. I have educated myself through the internet and sites such as this one so now I work hard to help make people aware of E.

Here in Colorado the Epilepsy Foundation does have a Facebook page.
http://www.facebook.com/pages/Denver...o/100551728065

There have been several Sudden Unexplained Death in Epilepsy cases in this state within the past few years and they are discussed on this website, which, IMO, clearly and openly needs to be discussed so people can prevent it from happening. Here are their stories:
http://www.chelseahutchisonfoundation.org/
http://www.nytimes.com/2010/07/27/health/27epil.html?


We all need to keep on talking about it and writing. Here in Colorado November is a Purple month for epilepsy.

[CQ:)]

Just a silly question -

But is November epilepsy awareness month in all countries or just some countries?

I know here in Australia epilepsy awareness week was in May where as I think it was a different month in America.

[Nakamova]

I think it's officially just in the U.S./Canada. But feel free to make it an aussie thing too!

[CQ:)]

I think it's officially just in the U.S./Canada. But feel free to make it an aussie thing too!

Thanks Nakamova,

I thought it may have been an American thing but just wanted to confirm it. I have still made a lot of my facebook friends aware that it is epilepsy awareness month & asked them to join Raes facebook page. Hopefully my friends will also spread the word to their friends .

[Rae1889]

Thanks CQ!!!! we are up to 150 people. and there is another event out there with 500 and something. Clearly not enough people. so keep spreading the word!

[mlbandura]

I know around my area (don't know if it was world wide) that for Breast Cancer (October) people were putting pink streaks in their hair for support. I am going to do purple streaks and try to get as many friends and family to go along with it. Also, at the gallery I work at my boss is letting me put something in the display window in November for Epilepsy. Just don't know what yet. Any ideas? And I am trying to figure out how to contact the Baltimore Ravens Football team and see if the will do something to show their support, their color is purple after all!

[Nakamova]

mlbandura --

How about putting a sign in the window that says: "November is Epilepsy Awareness Month" that also lists websites for more information. Plus have some pamphlets or flyers to hand out that list myths about epilepsy, and places for more info...

[mlbandura]

That's a great idea!! I love the part about fliers. i am going to get started on that right now!!!

[mlbandura]

I have completed what I am going to put in the window. I put it in my pics on Facebook. The link is facebook.com/photo.php?pid=30980391&l=036eaff287&id=1243458255 if anyone would like to check it out. Also please feel free to steal it and put it on your profile if you would like.

[Nakamova]

It looks great!

[CQ:)]

Thanks CQ!!!! we are up to 150 people. and there is another event out there with 500 and something. Clearly not enough people. so keep spreading the word!

You're more then welcome Rae ,

I usually don't send out group invites on Facebook but this time I was happy to. On my message I put that I was sending the invite for a good reason. I then went on to explain that November was epilepsy awareness month & every person who clicks attend or invites another friend is help make more people aware of epilepsy.

All the people I sent the invite to know I have epilpesy & how it is affecting my life at the moment. I haven't checked lately who attended & who didn't.