Epilepsy Foundation

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Speak Up California!

This is the home page for epilepsy advocates in California! Join us in our effort to find a cure, stop discrimination and improve access to care and treatment.

Members: 97
Latest Activity: on Thursday

Discussion Forum

Which California Neuro's do you see?

Started by Heather. Last reply by Irene Flemming Dec 20, 2012. 1 Reply

Frustration

Started by Laurie Killian. Last reply by Cassidy Waggoner Apr 6, 2012. 4 Replies

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Comment by Jennifer on July 27, 2009 at 2:17am
I'm so glad they have this website and these groups. I needed to talk to people with epilepsy for 33 years now. All I know is the people on here for a few days now and like talking to people who know exactly what I am going through. So thanks to all of you out there who have or know someone with epilepsy, because we all need eachother.
Comment by Ann Kinkor on July 22, 2009 at 8:18pm
Hello Everyone,
My name is Ann Kinkor. My husband Jim and I are parents of four adults sons,
three were diagnosed with epilepsy at various stages of their lives. All but one
is in remission. Our oldest son, Michael, met a wonderful young woman from NY who is a mechanical engineer who has epilepsy. They have a new baby.
I am a former Educational Administrator but now the State Advocacy Director for Epilepsy California- a state coalition of affiliates working hard on health and education policy issues with key state legislators. On August 15th, EC will
be featured hearing witnesses at the California Legislature Select Committee on the Administration of Medication in School Settings. If you would like more information on this hearing and provide testimony to it, please contact me ASAP at akinkor@aol.com. We want to invite you to come aboard our state advocacy program which is linked with SUSO and EFA efforts. Welcome! Join Us!
Comment by Rebecca Veasman on July 6, 2009 at 1:11am
The last seizure I had causedme to fall in the kitchen and sit down real hard. I compressed my lower spine. I hate taking medicine, but I was in pain. My husband talked me into letting the doctor give me morphine in the emergency room. They brought me over to the MRI and I remember nothing after that until we were heading home. For about a week, I was willingto take my pain pills and muscle relaxers every day. I began careful exercizes to help my back loosen up on it's own. That was about three months ago. I finally can say that my back is fine. I thought it was better before it actually was, but I could tell it wasn't when I lifted a full laundry basket. This is only the latest of the many problems caused by E, but I am optimistic and I know that a cure is not far away.
Comment by Gina S on June 18, 2009 at 11:21am
Hello, I'm Gina. I'm from the Sacramento area, and have been epileptic (TLE) since I was a kid-- at least 17 years, probably more.
I'd love to get more involved in advocacy here in our State's capital. I was lucky enough to go to the NorCal walk for epilepsy 3 years in a row now, and to the national walk in DC 2 years ago. It's about time we all started to Speak Up! Cheers!
Comment by Stace and Marie,Eide on June 18, 2009 at 11:12am
Hello My Name Is Marie, I joined this site to help support My Lover of 10 years she has been fighting Epilepsy since she was 18 years old. She is now 44 and has been on all kinds of different med and for the first time in a long time she has been Seizure free for 3 months. I hope that one day we can find a cure for this disease so that all the people with Epilepsy can live long happy lives with out worry. Thank you for reading what I had to say Now lets work together to find that cure....
Comment by Anita on June 16, 2009 at 4:14pm
Hello! Just joined this site, started my page, and now I am joining this group!
The Epilepsy Foundation of San Diego County is having an educational and supportive conference coming up (I advertised it in the "Events" page). I will be speaking there--a lead-in to a professional who will then facillitate. I'm excited to play this role, as I've been wanting to advocate for epilepsy for a while. Although I was dx 15 years ago, side effects from my meds prevented me from making much sense :-) or having the energy to pursue this path until now.
Looking forrward to meeting all of you!
Comment by Ronald Robert Moore on June 15, 2009 at 11:31pm
Hi, my name is Ron Moore. I had my first grand mal seizure when I was fifteen. I was in the backseat of my best friends parents car along with my girlfriend from high school. My best friend had just received his drivers license, and he and his girlfriend sat in the front seat. We were about half way through and "Elvis" movie, and the year was 1959...
Comment by Rhonda Burgin on June 15, 2009 at 10:23am
Hello. My son has E, started at age 10, we had been seizure free for 2 years and then out of the blue, they started again.

I am looking into sending him to a camp this year, anyone have any suggestions, feedback, etc?
Comment by Jacquelyn on May 18, 2009 at 9:38pm
Hi my name is Jacquelyn. I was diagnosed with E at 11, but had been have absence sz's for some time before that. We didn't know what they were at the time. I've tried many meds and am now controlled with Topamax and Keppra. I've had to deal with several side effects, some mild other serious. I've also had all the tests done. Fornutaley, I haven't really be discrminated against...yet. I have been told by one person recently though "But, you look normal." That didn't make me feel too good about myself. I guess he had this preconceived notion that all epiletics wore helmets and were disabled. Still hurts when I think about it. People need to be educated about what epilepsy really is.
Comment by James Stayton on May 4, 2009 at 2:04am
My Name is James at I have had E since I was 12. Twenty years later I am still having them but for the most part controlled. I am still frustrated and distraught at the way people with seizures are treated. Ostracized, minimized and even discriminated against I am wanting to help take up the fight to help educate the public and help those who are oppressed.

I appreciate that this group is here .. how can I help to start?
 

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