epilepsy awareness

[LMReggcellent]

This is not meant to be a repeat announcement, only a question and late night rant.

How many people really knew that November is National Epilepsy Awareness month and that purple is epilepsy's color? I didn't know that until last year, my first November being part of the Epilepsy Association of Utah. How many people out there give a blank look at the word epilepsy and think that a seizure is always falling down and shaking? Now forgive me if I sound selfish because I don't mean to, but who doesn't know that breast cancer is pink and October? Every time I used a debit card last month I got a message asking me if I wanted to donate money for cancer research. That's great, research is a good thing and I hope they were happy with the results. But I don't see that for any other type of research, is nothing else important? I'm pretty sure there are more diagnoses out there besides breast cancer. We at the EAU are doing our best to raise epilepsy awareness. It's a topic at every board meeting and we all like to think that we're slowly but surely getting the word out, it starts in Salt Lake county libraries. But what does it take for people to know what I'm talking about when I tell them I have epilepsy and I work with the Epilepsy Association?

(thanks for reading, end rant)

 

[acpollard2010]

well since i have had e for 15 yrs i have known about the color for a few yrs and about a yr ago got the ribbon inked in my skin i dont need a bracelet and i see why its hard for epilepsy awareness when they have a month and color for every disease people get tired of hearing others preech i know they tell me to shut up.

 

[qtowngirl]

Yep knew about the colour, and in Canada our National Epilepsy Month is March.
Kudos to you acp for getting the tattoo, that is cool. My first impression actually when I read you did that was 'how ballsy.' To have such a permanent E reminder put on you like that, not something I could do, good for you.

 

[Nakamova]

Epilepsy has a visibility problem. It's widespread, but poorly understood. And I do think that the research may be underfunded as a result. The Boston Globe ran a great editorial about it during Epilepsy Awareness month in 2010: http://www.boston.com/bostonglobe/e...abates_epilepsy_lags_in_research_and_funding/

From the editorial:

Epilepsy is the neglected stepchild among neurological diseases. On a per-patient basis, it gets about 20 percent of the research money that Parkinson’s receives and about 50 percent of the Alzheimer’s total. These figures include contributions from the government, pharmaceutical companies, and nonprofit foundations. Most of the existing research has gone toward developing anticonvulsant drugs, but these have serious side effects and more than a third of epilepsy sufferers get no relief from them. Epilepsy causes more than 50,000 deaths a year — more than breast cancer.

 

[qtowngirl]

"Epilepsy causes more than 50,000 deaths a year — more than breast cancer." ???

Omg that's devastating. So how the hell can it be such a 'hush hush' disease? I just don't get it

 

[Cint]

"Epilepsy causes more than 50,000 deaths a year — more than breast cancer." ???

Omg that's devastating. So how the hell can it be such a 'hush hush' disease? I just don't get it

IMO, the reason it is still so unrecognized is so many people are ashamed (as posted here on CWE) when they have seizures in public, they wish it would just go away. They don't want to talk about it and/or don't want anyone besides family members to know about their illness. And so often, many of us get those comments like, "you look fine" or " you don't look like you have anything going on inside". Just plain rude comments from those uninformed outsiders. The sad thing is, like in Nak's posting, it causes soooo many deaths a year.... many from SUDEP..... or accidents from seizures.

I met a mother who lost her daughter to SUDEP and started a foundation to inform others of SUDEP.
http://www.ChelseaHutchisonFoundation.org/