Epilepsy Foundation

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Speak Up Nevada!

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

Members: 30
Latest Activity: Apr 2

Discussion Forum

Information for Nevada!!!!

Started by Nevada Epilepsy. Last reply by Suzi Davis Feb 14. 1 Reply

Las Vegas Support Groups?

Started by Seruzies. Last reply by Seruzies Apr 21, 2011. 2 Replies

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Comment by Suzi Davis on April 2, 2014 at 5:39pm

I wish I could go I cant afford it and I have no transportation

Comment by Andrew Gennuso on April 2, 2014 at 4:32pm

http://www.eventbrite.com/e/6th-annual-nevada-epilepsy-conference-r...

Register above for the 6th Annual Nevada Epilepsy Conference hosted at Chapparal High School on April 5th.  There will be lunch served and some very great speakers presenting on a variety of topics.

Look forward to seeing all of you there!

Comment by kjsdestiny@yahoo.com on April 1, 2014 at 3:06am

Hello everyone,

I'm Kim i've been here in Nevada for 2 almost 3 years now. I can't find proper health care. I went to Dr.Torch who told me I was faking my seizures, altought they were witness by the Doctor's in both Renown and Saint Mary's ER also because I could not find proper care I lost my SSI which I've had for 13 years to date. I'm told I can't return to my former position a teacher due to being a liability.  I myself due to my memory loss, now horriable grammer, spelling and sentence structring I wouldn't be a help to the children, other then arts and crafts. Finding work has been an issue if I disclose my epilepsy I don't recieve a call back,  if  I don't disclose my health issue because of all my degrees I not only recioeve a call back but im almost always hired but the joy doesn't last long as soon as I have a seizure at work im let go. Any suggestions?

Comment by Michael Waller on February 28, 2014 at 7:05pm

I moved to Ely in June 2013 after being offered a position with the State and an opportunity to expand my career as a therapist to children and families.  This move was costly, and even more so as the timing was planned more at the convenience of my new employer than it was for my wife, who had to stay back and pack while I started this new job.  It wasn't long before our savings dwindled.  I took a significant pay cut in salary and benefits, but since I would be working toward licensure, it all seemed well worth the sacrifice. 

 

On December 10th, I had a grand mal seizure while at a training in Carson City.  After I informed my supervisor (mistake), I had to get a physician's release to resume normal duties.  I guess some would say it was very compassionate of them to wait until after Christmas to fire me, but It would have been nice to know as soon as possible that I would need to trim expenses.  I was never told the reason for the termination except that I am a probationary employee and they do not need to give a reason.  That's one way to avoid the Americans with Disabilities Act.  There was never a discussion of reasonable accommodations, and every inquiry I had with respect to the decision about resuming my normal duties was a robotic, "we can't discuss that."  

 

My evaluation was excellent, and there had been no complaints about my performance or conduct at any time.  I have been in this field of work for over 20 years, so I have a pretty good idea as to the expectations and professionalism required in a job like this.  I find the integrity of NV Dept of Health and Human Services to be so disappointing. 

 

Now I am here, and looking at options.

Comment by jenny on February 7, 2014 at 9:27am
Hi,

My little girl is nine years old and has had epilepsy since she was nine months old. Jennifer Lind, I am in Reno and have looked and never found any support groups.
Comment by Jennifer Lind on January 11, 2014 at 1:11am

Hello,

Wondering if anyone knows of any resources or support groups in Northern Nevada?

Thank you for any info!

Comment by Richard A. Smith on February 2, 2012 at 12:29am
Hi Nevada all 23 strong I look forward to talking with everybody telling stories and how we are handling them.

Thanks Rich
Comment by Seruzies on April 20, 2011 at 12:44am
On April 25th, I'm having temporal lobe surgery at: THE SPINE AND BRAIN INSTITUTE here in Las Vegas, NV!!!
Comment by Cristina Orozco on March 10, 2011 at 8:40pm

 

 

I am a mother of a 14 year old son with High Functioning Autism. In 2009 he had his first seizure. He had about 10 before they got controlled with medication and prayer. He has "Complex Partical" seizures. He has been seizure free for 1 1/2 and this week he had another seizure. His fears came back about seizure again This time he is overly tired for days and has lots of nose bleeds. Is this common? Nevada needs more resources for living with epilepsy

Comment by Angela Burnette on September 16, 2010 at 12:10am
Hi Everyone,
My daughter Avery is 14 months and has been diagnosed with generalized seizures four months ago. Her seizures occur usually when she's waking up, where her head and legs will come toward her chest. On top of that, she is developmentally delayed. She's been diagnosed with low muscle tone.

The process of finding medication(s) to control them, doing bloodwork to find out why she has them (genetic, hereditary), and doing more testing to determine if she's got other disorders has been so frustrating. My heart breaks everyday for her because she is so young so sweet so beautiful, but she can't tell me how she feels, I'm force-feeding drugs into her... and I fear that the seizures will not stop and she will need special care later on in life.

If there are any parents out there who have similar experiences, or if anyone out there has had seizures since you were an infant, I would love to hear from you. I need to know that she, we are not alone. I need to know that there is hope.

Thank you.
 

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