Tell Us how you plan to help others get seizure smart. We'd love to hear ideas!
Latest Activity: Nov 25, 2014
Tammi, do you have "a Medical I D Bracelet?" Get one and wear it, you can have Epilepsy engraved on the back and EMS will look at it and know what to do. Without one they could think you were diabetic, or even having a heart attack. It won't advertise your condition because that will be on the back.
We are the ones that have to stand up and educate others about what we live with or things are not going to get better. Its a shame but even the medical field can be just as disrespectful about our situation as everyone else so that is why I am doing as much as possible where I live to get more understanding and training to those who need it and try to help us out more. I was treated very badly by an ambulance crew that came to pick me up after I had a seizure and passed out. I was later told how these men treated me and I guess one man thought I was just faking the whole thing and so instead of using the right procedure picked me up by the head,feet and belt loops and dropped me onto the gurney to take me into the hospital. The head of the Epilepsy foundation in my community was appalled by this and is going to make sure none of this is going to happen to anyone else so we are writing a letter telling what happened and going after them. We are doing a lot of educating people here to make this more understood and that is the answer if we are going to get any action! So anything you can do where you live is appreciated by all.
I am writing a book that will go to the publisher soon. I have had seizures for 34 years. I was nurse for many years but had to stop in 2008 when my seizures became worse. In my book I discuss my seizures and what I have learned, what I have taught other people and how it has affected my family over the years. I also wrote poems in the books about auras. I will post when my book is out. My sister also has seizures. I hope everyone has a great weekend.
Sam, I participated in a video made a few years ago where they interviewed 4 of us. My doctor asked me to participate because I have always remained positive and didn't let my seizures stop me from being in organizations in high school, going to college, working and going out to public activities. We were filmed and followed for 3 days. A great experience to be a part of. This film was distributed among other Support Groups throughout the Texas Region. Other videos have been made, but as we all say, it needs to be publicized to the public more and you have a great idea. I would love to be a part of it or be glad to share with you what we did in my video. Don't stop striving for your goal!
Congratulations Ian, that's what it takes. Our epilepsy foundations have these resources but when their not called for, they sit idle until people like you or me request.
For those who saw my BASE comment, I have recently contacted the Community Educator of my local foundation and we're starting up our youth council again, so I'm going to pitch the idea to them and see if we can get something together.
Tammi, that's good to hear. With all the commosion about guns and bullying, along with economical problems "people often forget in lieu of other more frightening items." Good work.
Because of what happened with me recently I took it up with the Epilepsy foundation in my state and they are going to start educating not only schools but bus drivers, paramedics, and as many other people we can so more people will understand and know what to do instead of just stand there and stare.
Bajo Cat, I think your right in most of your desires; however with schools and paramedics, I would think a local Epilepsy Foundation Staff would give a little more meaning to school children. As far as paramedics, I would seek or contact a local Medical School to give a little more insight as they view it--to teach and help others.
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