Purple Day

>> Friday, March 26, 2010

It's just Epilepsy.

There is a fear, inherent in the human being that grasps a hold of anything deemed different and labels it bad or loathsome. The uneducated, unenlightened mind will wrap itself up in this fear and lash out as a defense against that thing, that unknown, from becoming apart of themselves. The being will attack what it does not understand. It is a natural, horrible mechanism, not to be bullied and berated into oblivion but to be taught and trained to see the facts, the truth in the fear. And thus, eliminating the attack response, leaving ignorance behind and acceptance in its place.

So let's get those facts straight, from www.purpleday.org:

What is Epilepsy?
• Epilepsy is one of the most common neurological disorders, affecting 300,000 people in Canada and 50 million people worldwide
• Epilepsy is a group of disorders of the central nervous system, specifically the brain, and is characterized by recurrent unprovoked seizures
• Epilepsy can occur at any age
• Epilepsy is not contagious, and is rarely fatal
• Epilepsy has many different causes, and determining the specific cause for any one person's epilepsy may be difficult
• People with epilepsy have the same range of intelligence as the general public
• A single seizure does not constitute epilepsy. At least one in every 10 people will have one seizure in their lifetime


Bug has NOT been diagnosed with Epilepsy. He has an official diagnosis, at this time, of Generalized Seizure Disorder. There is a difference. Medically. When you are a mother watching your son seize several times a day, it doesn't matter what the clinical difference is (and that CLINICAL difference is simply put: They can't put his EEG pattern into a known Epilepsy pattern), it matters that he doesn't stop breathing, or that he falls.

Bug has a slightly greater chance of death than the person with the known Epilepsy. The biggest problem with a seizure, isn't that it causes brain damage, that is a myth, it's that the person could hurt themselves. Seizures CAN cause brain damage, do not misunderstand, but generally speaking it is caused by the lack of oxygen from the seizure, unless the Epilepsy is associated with another chronic condition.

The reason Bug has a greater chance than most is because we do NOT know what is causing them, or how bad they can get. Sudden explained death in people with seizures occurs more often in persons with Generalized Seizure Disorder. It's not a drastically greater chance, but it's there, always in the background.

There is no reason he will not have a fun, full life. None whatsoever. WE will take him to all the places we had planned on taking our children and he will do all the things every other child would do. One of us will do it with him, so he won't get hurt if he seizes in the middle of it. But, he will live his life like it is a gift to be enjoyed.

And THAT is why I wear purple proudly and obnoxiously today. It is my dedication to him, that I am NOT ashamed or scared, that I will not let this slow him down, that he will smile more than he cries. And that we will be proud that he is our son, brother, grandson and nephew. He is sunshine. And he is Epileptic. Big deal.

I love you Bug. More than you may ever know.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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