Saturday, October 1, 2011

Epilepsy: How Does it Compare

It’s difficult for me to grasp exactly what percentages and numbers mean until I compare them to something else (I didn't get the math gene in my family). I need a reference point and went searching for this so I could understand the “numbers” of epilepsy better.

More than two million Americans have epilepsy (some estimates put the number closer to three million). This seems to me to be a lot of people! Digging further, I find out 1% of the entire population has epilepsy which makes it seem rare to me. So which is it and why is it important to know?

First, it’s important to know so federal research dollars can be allocated appropriately. I’m not even sure if there is an established “appropriate” way federal research dollars are divvied up but I’m pretty sure as far as private donations are concerned, it’s a matter of the squeaky wheel getting the most money. It also helps to have a big name celebrity attached to a charity or a common condition affecting more people or a telethon or even a disease that is well known or more “relatable.”

Many people don’t even know what epilepsy is (so it’s not well known) and others are afraid of seizures and the person having them (not so relatable) so research dollars are scarce.

For me, education about epilepsy is becoming more and more important. I want to learn more about it and I want others to learn about it too. If education brings in more research money then that would be an added bonus. Since I’m not a celebrity we’ll have to go about educating and raising funds the old-fashioned way: through blogging and tweeting.

Okay, so that’s not really old-fashioned but I don’t know Morse Code and you certainly don’t want me doing a singing telegram (count yourself lucky if you’ve never heard me sing).

Let’s understand the numbers. Government resources or foundations for each of these diseases estimate the number of people in the United States living with these conditions:

HIV: 1.1 million
Parkinson’s Disease: 1.5 million
Epilepsy: 2 – 3 million
Alzheimer’s Disease: 5.4 million
Diabetes: 25.8 million

Could you have guessed that epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined? (Thanks to Cure Epilepsy for that fun fact).

The federal research dollars spent on Parkinson’s disease is five times what is spent on epilepsy. I find this astonishing but absolutely don’t want to take away research money from any other disease. What I’d like is for epilepsy to at least be as well funded and as well known as these other diseases so the stigma is removed, people understand what it is, people have it on their radar to make donations for research and we can get down to the business of curing epilepsy and fully controlling seizures.

You can help by joining the Epilepsy Foundation in their quest to get more federal research dollars. Please sign the petition here. You can also make a donation to the Epilepsy Foundation here.

National Epilepsy Awareness Month isn’t until November so I’m jumping the gun a little bit but, the way I see it, Epilepsy Awareness needs all the help it can get!


Unknown said...

I didn't realize epilepsy was such a small percent. The funding for Parkinson's is much higher because actor Michael J. Fox has it and he's been very actively pushing for the money.

Rita said...

Yikes, more people need to know. I have a friend whose husband has epilepsy so I am familiiar, but as you said many are not...and it affects SO many! They sure do need help in spreading awareness....I will sign the petitions. They need more people like you...and a celebrity or two wouldn't hurt, lol! I think what you are doing is wonderful for ALL affected...and their families. It can be a scary time for all.

Rita Brennan Freay

Trish Hughes Kreis said...

I appreciate you signing the petition, Rita. I just think if there was more funding for research then the 30% of people with epilepsy whose seizures aren't controlled could be helped eventually. I really appreciate the support!

Trish Hughes Kreis said...

June, What Michael J. Fox has done for Parkinson's research is nothing short of phenomenal. I don't want to take anything away from him or his efforts (I love the guy and admire everything he's doing -- he's using his celebrity for good!). What I'd like to do is raise more awareness about epilepsy to (1) reduce fear of it and (2) increase research. Thank you so much for supporting my efforts to do this!

Judy Stone-Goldman said...

Oh dear, I wrote a long comment and it disappeared after I tried to post. Basically I said that the numbers really surprised me, but I think with the Internet, it's a lot easier to get awareness out there now. Epilepsy is scary to people (seizures), and the history has negative images that create mistrust (the idea of "fits" and foaming at the mouth). Reeducation is a long process! You are part of that process.

I'm going to take a look at the petition now. Let's see if I can get this to post this time.

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Fiona Stolze said...

I was really surprised at these figures Trish. When you put them into context they begin to really make sense (or not make sense, to be honest).

I agree that epilepsy has this really scary factor to it but I'm sure it's just because people don't know how to react or deal with it.

My mum suffers from a mild form of epilepsy (temporal lobal)and experiencing it is not scary when you are prepared.

Sufficient funding for such large numbers would seem to be a very reasonable request. I hope that this gets the attention it deserves. xxxx

Fiona Stolze

Trish Hughes Kreis said...

Fiona, I didn't know that your mom has epilepsy and appreciate you sharing that here. I think once we get past the "scary" factor, more research money will be available. The only way I know how to get past that is through education. A slow but sure process! I always appreciate your support, Fiona.

Trish Hughes Kreis said...

Judy, I'm sorry about your comment. The internet is really helping to educate about epilepsy. Thank you for supporting the petition!