November is Epilepsy Awareness Month



November is Epilepsy Awareness Month. But, sometimes it seems the month can come and go without mention of a single event to raise awareness.

Now, that’s not to say that events don’t happen. Epilepsy Foundation offices around the country are organizing events, conferences and walks to celebrate Epilepsy Awareness. And, they are doing their best to raise the public consciousness.

But what could be wrong with a little extra PR to let folks know the events are happening?

Look up your local Epilepsy Foundation Affiliate to find out what’s happening in your neighborhood at:

Epilepsy Foundation Affiliate Lookup

And if you can’t find anything in your neck of the woods, I’ll be speaking at the Epilepsy Foundation of Eastern Pennsylvania’s: Epilepsy Education and Information Exchange on Saturday, November 7, 2009.

See you there.

Epilepsy and H1N1


Image of the H1N1 influenza virus taken in the CDC Influenza Laboratory.

To give you a sense of how widespread this thing is, The American College Health Association recently reported that there were 7,001 total suspected cases of H1N1 on college campuses as of September 4.

That was when the kids had just arrived to school. We are only in September — flu season hasn’t even really begun yet.

I’d heard flurries that people with epilepsy be more attentive to what is happening with H1N1, but I didn’t think we were more at risk.

I lived in my happy bubble of denial until the CDC released a report, which exposed a common denominator in more than 2/3 of the children who died as a result of the H1N1 virus in the US. Approximately 67% had “chronic high-risk medical conditions such as epilepsy.”

I gotta say I was surprised. I checked and double checked. And that’s when I found that AES, CURE, Epilepsy Foundation, Epilepsy Therapy Project and FACES have joined together in support of public awareness on H1N1 virus risks in children with epilepsy, in response to the new CDC data.

Eeek!

This CDC report ran in their Morbidity and Mortality publication and emphasized how important it is for parents and guardians of children with chronic medical conditions to consult with their physicians about obtaining vaccinations against H1N1.

According to the CDC H1N1 FAQ site:
CDC’s Advisory Committee on Immunization Practices (ACIP) has recommended that certain groups of the population receive the 2009 H1N1 vaccine when it first becomes available. These target groups include pregnant women, people who live with or care for children younger than 6 months of age, healthcare and emergency medical services personnel, persons between the ages of 6 months and 24 years old, and people ages of 25 through 64 years of age who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems.

We do not expect that there will be a shortage of 2009 H1N1 vaccine, but availability and demand can be unpredictable. There is some possibility that initially the vaccine will be available in limited quantities. In this setting, the committee recommended that the following groups receive the vaccine before others: pregnant women, people who live with or care for children younger than 6 months of age, health care and emergency medical services personnel with direct patient contact, children 6 months through 4 years of age, and children 5 through 18 years of age who have chronic medical conditions.

For additional information between H1N1 and Epilepsy you can visit any of the sites I have linked to above or you can follow the CDC tweets at:

http://twitter.com/CDCemergency

Epilepsy’s dirty little secret


Epilepsy is not that serious, right? I mean, its not like you can die from it or anything. Right?

According to the American Epilepsy Society, “it is very uncommon but not unheard of for people to die with a seizure.”

‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” But after having epilepsy for years, I just didn’t believe that the odds were in our favor, considering 3 Million people in the USA have it. So I did a little digging.

It didn’t take much. I quickly found that the AES considers ‘very uncommon’ to be approximately 45,000 deaths each year. According to the Epilepsy Foundation of America, about the same number of people die each year from seizures as die from either breast cancer or traffic accidents.

Yep, you read that right. Breast Cancer and Traffic Accidents. And really, how often are we walking to raise money for epilepsy or passing laws to fight for all those people dying from seizures?

Like I said the odds were not in our favor, there are more people in the USA (3 million) with epilepsy than there are people living with:

Autism (1.5 million)
Parkinsons (1.5 million)
MS (400,000)

Okay, so you know the secret. But what can you do? Well, start by talking about it. Below are some sites you can visit that are talking about epilepsy.

CURE
Talk About It
Epilepsy.com

For additional resources, check out my Epilepsy Resources section. And, for more startling statistics read Jon Meacham’s article in Newsweek titled “A Storm in the Brain“.

Solo art exhibition by woman with epilepsy

This fall, an emerging talent in the art world–and a woman with epilepsy–will have a solo exibition in Philadelphia.

Cathy Hozack on being an artist
“I’ve had epilepsy since I was five. The seizures and strong medications made me tired, confused, depressed and out of touch with reality. Over time, parts of my memory have gotten worse, but I can concentrate when using watercolors. I pick up a brush and the problems no longer matter. What I learned in Color Theory class is ingrained in my mind forever – but I have forgotten your name already.

I express my strongest feelings on paper and canvas. How I record the world around me depends on my mood and on what is going through my mind. I want to show everyone how I see the world around us.”- Cathy Hozack, October 2008

To experience her art in person:
Cathy Hozack – Solo Exhibition
The Coffee Bar
Radisson Plaza – Warwick Hotel
1701 Locust Street, Philadelphia, PA 19103

Opening Reception
Wednesday, September 23, 6 to 8pm

Exhibition Dates
September 16 through December 14, 2009

To see her work online visit cathyhozack.com

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