Epilepsy Talk
Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs…Take Action NOW!!!
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Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs!!! Take Action NOW!
The House of Representatives recently passed HR 1, a bill that would provide funding for millions of government programs for the remainder of the current fiscal year. The bill contains cuts to programs that are important to people with epilepsy including: $1 billion in research funding at the National Institutes of Health, of which $5 million will likely come from epilepsy.
The Senate is likely to vote on this same measure in the next week.
Please ask your Senator to vote against HR 1 when it comes to the Senate. Please also spread the word by telling a friend about these cuts, NOW.
MEG — Could It CURE Your epilepsy?
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Regardless of your age or epilepsy syndrome, all patients of all ages deserve the possibility of living seizure-free. And for those with intractable seizures, surgery is often the answer. But it’s a scary and risky proposition.
But, now there’s new hope when all else fails. A powerful new brain scanning tool which could make all the difference between successful and unsuccessful surgery. Even for those whose surgery has failed before.
Called the MEG (Magnetoencephalography), this powerful scanner acts as a real-time brain mapping and imaging device to determine where the epicenters of seizures are in the brain. It can detect changes in brain waves that occur on the order of milliseconds, as opposed to a second or more with magnetic resonance imaging (MRI). And for a select few patients, those extra milliseconds can mean the difference between life and death.
Tags: brain scanner, CURE, death, Epilepsy, insurance approved, life, MEG, non-invasive, precise, surgery
Clinical Trials. YES or NO?
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If I was asked to take part in a clinical trial, I’m not sure what I’d say…
First there is the fear factor. Would I be a guinea pig for something dangerous? Would they take away my medicines? Would it hurt me? Would it change something in me?
I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/
Here’s what he had to say…
Tags: clinical trial, Epilepsy, hope, medications, progress
Your Child Has Just Been Diagnosed With Epilepsy…
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The diagnosis comes in. It’s epilepsy.
Your heart drops to the bottom of your stomach. You may panic…or cry…or call in the troops for support.
Whether your child is an infant, toddler, grade schooler, adolescent or young adult, how you behave now will make a world of difference to their future.
Here are some resources to help you help your child…
Two Tests Could Aid in Risk Assessment and Early Diagnosis of Alzheimer’s
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From “The New York Times”, published January 18, 2011…
“Researchers are reporting major advances toward resolving two underlying problems involving Alzheimer’s disease: How do you know if someone who is demented has it? And how can you screen the general population to see who is at risk?…”
Tags: alzheimer's, diagnosis, mental decline, predict, risks, tests
The Sacred Disease. A Movie You Can Not Afford to Miss…
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The Sacred Disease is a movie you can not afford to miss…
Motivated by lack of funding and awareness for epilepsy, this film covers the full spectrum of what it’s like to live with this neurological condition by following the lives of three individuals. The Sacred Disease displays an intimate portrayal of the complexities and daily difficulties faced by people with epilepsy.
Tags: complexities, difficulties, Epilepsy, hope, movie, Research, sacred disease
There IS Hope!
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There IS Hope!
Here is an encouraging letter I received from the Department of Health & Human Services:
Thank you for your personal message regarding the training of law enforcement officers and other public safety personnel who respond to people experiencing epileptic seizures…
Let’s Educate Candidates for Congress about Epilepsy!
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Take Action: Let’s Make Epilepsy an Election-Year Issue!
Election Day is less than a month away and candidates are paying close attention to what voters have to say. This gives us a great chance to educate them about epilepsy, the need to find a cure, better treatments and stopping discrimination in schools and at work.
Click on this URL to take action now
http://capwiz.com/efa/utr/2/?a=18239501&i=94296635&c=
or copy the entire URL and paste it into your Web browser.
Increase in Seizures Seen in Kids With H1N1 Flu
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MONDAY, Sept. 20 (HealthDay News) “Children made ill by the 2009 pandemic H1N1 swine flu virus suffered more seizures and other nervous system problems than those with seasonal flu, a new report reveals…”
Tags: children, complications, H1N1 swine flu, more seizures, status epilepticus
UPDATE: AED Suicide Risk…
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July 28, 2010 Medical News Today
“While the Food and Drug Administration (FDA) requires a warning of an increased risk of suicide for all epilepsy drugs, a new study shows that only certain drugs may increase the risk. The study is published in the July 27, 2010, issue of Neurology®, the medical journal of the American Academy of Neurology…
Tags: anti-epilepsy drugs, depression, new study, risk, suicide
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