Epilepsy Awareness Month….. or how YOU can make a difference

just over 6 years ago I really didnt care what November was, other then one month closer to Christmas and turkey day.  Then my daughter Kim had her seizure and was diagnosed with Juvenile Myoclonic Epilepsy, and not soon after left us due to Sudden Unexplained Death in Epilepsy.  I know a few of you are going, “geez not this story again….”

I will try to make this one just a bit more different and hopefully engaging and educating……

Lets start with this definition I found when I Googled Epilepsy………

ep·i·lep·sy

/ˈepəˌlepsē/

noun
noun: epilepsy
  1. 1.
    a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
Origin
More

mid 16th cent.: from French épilepsie, or via late Latin from Greek epilēpsia, from epilambanein ‘seize, attack,’ from epi ‘upon’ + lambanein ‘take hold of.’
 
From personal experience I can tell you that Epilepsy doesnt just mean the drop down full on convulsion thing of a Generalized Tonic Clonic Seizure but also small simple things like the staring spells of an absence seizure like those of my 6 year old son, who may also have Juvenile Myoclonic Epilepsy, or the Simple Partial Seizures that affect my wife by playing with her emotions and sense of surroundings.  A seizure can be any of those things and there are many more different types out there that affect people in just as many different ways.
OK lets get back to why I am writing this post tonite, last month was a very popular and publicized month for Breast Cancer Awareness, I mean come on how many of you didnt know that October is Breast Cancer Awareness month?  Did you know November is more then just Movember…. it is also Epilepsy Awareness month.

The most difficult thing about writing this, isnt about losing my daughter or the fear of losing my wife or son to Epilepsy but how to write this without looking like I have ripped off every other website or blog about Epilepsy this month…..

So what I am going to do is leave you with links to a few websites, blogs and maybe a Facebook page or two to check out when you have the time.

I will also be donating the proceeds of ALL my sales on my Fine Art America website to 2 of my favorite Epilepsy and SUDEP organizations, so if you need something for a wall or some greeting cards check out the link over on the right side.

So lets get started with a few website…..

 Epilepsy Foundation 

Epilepsy.com

Citizens United for Research in Epilepsy (CURE)

Seize The World

Finding a Cure for Epilepsy and Seizures (FACES)

Connecticut Epilepsy Advocate

 Danny Did Foundation

Chelsea Hutchinson Foundation

SUDEP Aware

A few blogs

Beating Epilepsy

The Epilepsy Journey

Your Partner in Epilepsy

The art of living with Epilepsy

 Epilepsy Warriors

Facebook pages

Epilepsy Awareness

The Epilepsy Network

Epilepsy Therapy Project

Stand Up for Epilepsy

Epilepsy Support

That is a smattering of what is available on the internet for information and support.  If you have a question just ask.  I may not be able to answer but I am sure I can steer you in the direction of someone who can help you.

The one thing to remember, is that you are not alone,  the E community is a fantastic group of people 99% of whom are ready and willing to help you.

 

 

Written by

45 year old short fat balding man with aspirations of becoming a photographer of all kinds of stuff. I have 7 kids and a full time job (a few hours more then full time actually lol) and trying to cram everything into a very small amount of time per day.......

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