It was just announced that two of the largest nonprofits working on half of those living with Epilepsy are joining forces to form a unified organization. Together they will continue to work on education, awareness and research. This is exciting news for us! They are joining forces to no longer compete against each other but work together, share knowledge and resources to find a cure and to support us until they do. I think it;s exciting for our community! What are you thoughts?
Read the press release from ETP here
Epilepsy Therapy Project press release
Wednesday, October 10, 2012
Friday, October 5, 2012
New Awareness Gear Shop!
When I think about my life in terms of my Epilepsy, one motto comes to mind over and over "No Fear, No Stigma. It is one of my missions in life to dispel the myths associated with Epilepsy: by the way I live my life, to talk unashamedly about it and to educate. I challenge all of you to do the same. This disorder is very much an unknown for many. It leaves us in situations where we have very little control. Take it back through strength, education and support.
I've put this motto on gear for us to share with others. So, those of us living No Fear, No Stigma lives can show how we can break down the negativity associated with Epilepsy.
Check it out here!
http://www.cafepress.com/projectropes
There is a very small markup on these product which will go towards our work locally in Winchester,VA. We are in the process of forming an adaptive lending library that will serve children of all disabilities including those living with Epilepsy. ~Kim
Saturday, September 8, 2012
Log your trigger- Seizure Tracker
Why is it important to keep a seizure log? You want to find your triggers & eliminate or reduce their impact on seizures. Does the flickering of fluorescent lights in a certain store trigger a seizure? Is it lack of sleep or too much tv on a certain day? Keeping a log will help see patterns & know if your medication is effective! Let me tell ya...this epilepsy stuff ain't for light weights-get your game face ON!
About Seizure Tracker
"Our hope is that this website will empower people with epilepsy to become active leaders in their own treatment, working hand-in-hand with doctors. The easy-to-use tools found at SeizureTracker.com allow patients to create personalized reports of logged seizure activity and medication history that can be easily shared with their medical team.
The reports generated by SeizureTracker.com become a valuable communication aid when meeting with doctors because all the necessary information is in one brief report. With a simple keystroke, you can customize a report to outline any talking points you may have"
About Seizure Tracker
"Our hope is that this website will empower people with epilepsy to become active leaders in their own treatment, working hand-in-hand with doctors. The easy-to-use tools found at SeizureTracker.com allow patients to create personalized reports of logged seizure activity and medication history that can be easily shared with their medical team.
The reports generated by SeizureTracker.com become a valuable communication aid when meeting with doctors because all the necessary information is in one brief report. With a simple keystroke, you can customize a report to outline any talking points you may have"
"Witches Do Not Cause Epilespy" Global Awareness
The goal to change the stigma associated with Epilepsy is a global effort. Those members working within the Jerusalem-based Israel Epilepsy Association are educating patients and children throughout the country about Epilepsy and it's effects.
"Witches do not cause epilepsy"
"Four years ago, then-director-general of Soroka (and now outgoing Health Ministry director-general) Dr. Eitan Hai-Am found a donor for an important way to reach children with epilepsy – the publication of a Hebrew-language children’s book called Gveret Epilepsia (Ms. Epilepsy). Written by Shai Dannenberg, colorfully illustrated by Ina Katzav and published by Orion Books, the hard-cover volume simply tells the story of how a boy in first grade named Shai was ostracized by his classmates for having epilepsy.
His teacher Ronit, noting his loneliness, tells her entire class the story of a land called Lomargishtov (don’t feel well, in Hebrew), which was inhabited by strange, tiny and transparent creatures, each of them connected to a different conditions, some of them infectious. One always had a runny nose, and another a sore throat. Ms. Stomachache was obviously just as unpopular, just like Ms. Flu. The last three were Ms. Diabetes, Mr. Headache and finally Ms. Epilepsy."
His teacher Ronit, noting his loneliness, tells her entire class the story of a land called Lomargishtov (don’t feel well, in Hebrew), which was inhabited by strange, tiny and transparent creatures, each of them connected to a different conditions, some of them infectious. One always had a runny nose, and another a sore throat. Ms. Stomachache was obviously just as unpopular, just like Ms. Flu. The last three were Ms. Diabetes, Mr. Headache and finally Ms. Epilepsy."
"What's this seizure thing anyway?"
As an Early Childhood Educator, I truly believe that children can cope when given the tools! We need to be aware that our children have questions about their disorder/seizures whether or not they verbalize those question! They want to know what is happening to them. Teaching with information that is age appropriate is GOOD!! Help your child become resilient...you can do it!
Take a look at this "What is this seizure thing anyway?" read it over with your child. It' a great place to start.
Take a look at this "What is this seizure thing anyway?" read it over with your child. It' a great place to start.
Toys as triggers!
Something to think about for today! When shopping for toys for the upcoming season, there are some toys that can trigger seizure activity. We have to think about toys with flashing lights or video games. For my son, the LEAPSTER triggered staring episodes in him. Check it out! We always need to be aware of what might be a trigger and eliminate it. Here is a link on photosensitive seizures. Photosensitive Seizures
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