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Volume 7, Issue 7 July 2011
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COMMUNITY CORNER
Featured Story - Jessica Roiz
As I pulled out of the garage at 2am January 21st I remember thinking (between contractions), the next time I come home I will have my Jessica... Read more.
Forum Buzz
Ecstatic Seizures
Has anyone experienced "ecstatic" seizures? I've had a series of them recently, and they are amazing: totally outside the range of normal experience... Read more.
Depressed from AEDs
I am up to 300 mg on the Dopamax and also take valium 5 mg twice daily for E. The higher I go up on the AED the more depressed I become. Read more.
Topamax (Topirate) experiences
I am new to this website, why I have left it all this time I do not know. I have had epilepsy for 33 years now, diagnosed when I was 5 years old. Read more.
2011 Goal: 50,000 FANS!
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What's New
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Surgical treatment for seizures
by Dr. Lily Wong.
Surgery for epilepsy may be an option for some children and adult patients when medications do not control seizures.
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Who is at risk for SUDEP
This research is an important study because it helps to further our knowledge of identifying individuals early on in their condition who may be at risk for sudden death from seizures.
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Dr. Selim Benbadis
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Who is Reading Your EEG? Should You Care?
by Dr. Selim Benbadis.
The misdiagnosis of epilepsy is common. About 30% of patients seen at referral epilepsy centers for difficult seizures do not have seizures and have been misdiagnosed. Such a wrong diagnosis of seizures has serious consequences and can in fact be life-changing.
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Morbidity and Mortality following Surgery for Intractable Temporal Lobe Epilepsy in the US
In the June 2011 issue of Archives of Neurology, Doctors McClelland and colleagues present a fascinating analysis of their research involving a nationwide inpatient sample of patients admitted for temporal lobe epilepsy surgery between 1988 and 2003.
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Recently Published Results of U.S. Government-Sponsored Workshop on SUDEP
by Dr. Elson L. So.
Momentum against SUDEP results from a continuing effort by the scientific and the lay communities in finding ways to expand research and education in SUDEP.
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Fetal Effects of Anticonvulsant Polytherapies: Different Risks from Different Drug Combinations
This study is important because it is one of the few to address the issue of combination therapy and risks to unborn children, as opposed to single therapy, which is the way most pregnancy registries are reported.
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Take a Look
Haven't been to the site lately? Wondering what news you've missed? Check out the running archive of stories that were featured in the "What's New" column of the newsletter.
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A New Idea! We Need Your Help.
Dear ETP Friends and Partners,
One of our supporters is conducting a survey on a new idea for a seizure detector that would automatically count and report seizures. This group is trying to decide what features this device should have and how it might be used. They are interested in your opinion — whether you experience seizures or take care of someone who does.
The survey is all multiple-choice questions and it will only take 5 to 6 minutes to complete.
To begin taking the survey, click here: www.seizuredetectionsurvey.org
Your opinion is important! Thank you so much for your participation.
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Keto News - Summer Reading on the Ketogenic Diet
Read Keto News now
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On My Mind: Dilantin. Joseph Sirven, MD, Editor-in-Chief of epilepsy.com, looks at this epilepsy medication.
Read now
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My Epilepsy Diary is available for the iPhone and the iPod touch from the iTunes App Store and on Android devices through the Android Market. Just search on the word epilepsy and download the application.
Start your diary now
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ETP Friends and Colleagues Present Testimony at the Institute of Medicine (IOM) meeting in D.C. June 2011
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 Epilepsy Therapy Project (ETP) Chairman, Warren Lammert, was honored to have the opportunity to join Kevin Malone, Steven Wulchin and many of our friends and colleagues in the epilepsy community on June 28th in Washington, D.C. for the Institute of Medicine Workshop on Public Health Dimensions of the Epilepsies: Health Care Quality and Access and Education of Health Care Providers, Patients, and Public.
ETP provided financial support for the IOM Report joining a large community of sponsors (24 organizations including AES, EF and TS to ILAE, FACES, CURE, Vision 2020 and many more) collaborating on this important work. Although the IOM effort is not directed at research and therapies, it is concerned with inconsistencies in care, access to care, misunderstanding of epilepsy, and needs in professional education around epilepsy – all of which are critical issues and issues which we seek to address on epilepsy.com.
The focus of ETP remains on the pressing need for effective new therapies, and Warren Lammert, ETP Chairman and Co-Founder kept that message front and center in his testimony. Testimony from Mr. Wulchin forcefully discussed the need for progress against SUDEP and steps that need to be acted on, and Mr. Malone addressed the plight of the many thousands of soldiers who will come home from our undeclared wars with TBI and a life with epilepsy and seizures.
ETP is honored to support the work of our many colleagues and continue to be impressed by the community effort reflected in the IOM process. We sincerely appreciate the opportunity to participate and share our message, and are now pleased to share with you the testimony's of Warren Lammert, Kevin Malone and Steve Wulchin:
Read Steve's Testimony
Read Kevin's Testimony
Read Warren's Testimony
Visit the IOM website where the testimony of all the participants in the workshop can be heard: http://www.iom.edu/Activities/Disease/Epilepsy/2011-JUN-28.aspx
About the IOM
The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public. Established in 1970, the IOM is the health arm of the National Academy of Sciences, which was chartered under President Abraham Lincoln in 1863. The mission of the Institute of Medicine is to serve as adviser to the nation to improve health.
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Marine Corps Marathon — Meet Team ETP Runner Jackie Clark
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 Epilepsy is frustrating, it is depressing, it is scary, it makes you angry and cry till you can't stop. Epilepsy takes a piece of your heart every time you experience a grand mal seizure. It keeps you up at night wondering if it will ever go away, will the seizures ever subside, will the worry ever stop.
I don't have epilepsy, but my 19 year old daughter Sage does and I can't imagine what it is like for 3,000,000 people in the U.S. alone. Not only does this disease effect the person who has it but it also tortures their family and friends.
Sage was diagnosed at age 9, but probably has had epilepsy since she has been three. As she has gotten older her seizures have gotten worse. In 2007, she had two grand mal seizures; in 2008 she had two more. Then in 2009 they increased to six and 2010 another six more. Sage is unlike all other 19 year olds, she cannot get her driver's license, she needs 8-10 hours of sleep a night or she has a seizure (not easy for a college student), she doesn't know when or where the next seizure will be, she is on two different medication which make her lethargic and her seizures have still have not stopped. She deals with all without complaining or wondering why her, I should take some lessons from her and appreciate what we have and stop worrying so much. She takes it all in stride and makes the best out of it. Sage is an amazing, sweet, loving person and I pray someday day she could live without medication. The doctors that we have gone to can't find the right medication for her. It is all trial and ERROR!
As a parent I feel so helpless, we are supposed to be able to protect our babies from everything. I just have to sit helplessly and watch as she has a seizure. There is nothing I could do to help and it crushes me. So when I got an email from the Epilepsy Therapy Project about running in the Marine Corps Marathon; I was ecstatic. I love to run and was planning on doing the NYC Marathon in November to try to beat my PR of 3:16 but how could I pass this up! My only concern was if I could finish, not because of the mileage, because I have done numerous marathons before, but for the fact that I will be so proud and honored to be running for just an awesome cause I'm not sure I could stop the tears from coming the whole way. Please help this awesome cause and support me in my run in any way you can.
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To support TEAM ETP, visit our website TEAM ETP – MCM Fundraiser
To support Jackie, visit her page
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About the Epilepsy Therapy Project
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