Epilepsy Talk

Help Remove Barriers for People with Epilepsy! | June 3, 2010

Alert your Governor about an Important Letter
This week, the U.S. Government sent an important letter to every state health department.  It stressed the importance of eliminating barriers that prevent people with disabilities from becoming fully integrated into their community.
Will you please send a pre-written email to your Governor and other state officials to notify them about this important letter?  All you have to do is click on the following link: http://capwiz.com/efa/issues/alert/?alertid=15082111
Many thanks for your support of the Epilepsy Foundation.  Together we can make a difference!


  1. The government is cutting back on Mammograms, as well. Sorry Phylis, I am neurtral when it comes to government issues. I obey the laws of the government, unless it interferes with Jehovah’s government.


    Comment by Ruth Brown — June 3, 2010 @ 12:28 PM

  2. Hi,
    I just want to say I love your blogs!! Very informative and important in breaking down the Epilepsy barriers. I hope you don’t mind, I may quote you and provide a link to this site from time to time. (I am also an advocate.) Thanks!
    Tiffany Webb


    Comment by Tiffany Webb — June 14, 2010 @ 1:22 AM

    • Welcome Tiffany!
      Feel free to provide links and/or quote what you’d like to. The better informed people are, the better off we all will be! 🙂


      Comment by Phylis Feiner Johnson — June 14, 2010 @ 1:41 AM

  3. Hi Tiffany, this is a great website. Phylis just keeps making it better.

    Phylis, I agree everyone needs to be informed about what is going on.


    Comment by Ruth Brown — June 14, 2010 @ 6:33 PM

  4. Phylis,

    I have had JME since I was 17 (I am now 53). Recently my seizure activity has increased and I was put on Keppra (in addition to my current Dilantin). It’s been a tough year+ not knowing what “normal” will be for me. I still have trouble with seizures, medication side-effects, and anxiety; and I take extra precautions, and have emotional and physical scars. My employer, a public health department, was less than supportive when I was at my greatest need (immediatley following a TC in the office). Sad to say, but if a public health department is unaware of the barriers faced by persons who suffer from epilepsy, I’d say we have a long way to go in terms of informing the broader public.

    BTW, I was pleased to run across your Website after reading your comments to the ETP blog about epilepsy getting worse with age. I will add your site to my growing list of resources.

    Thank you for your contributions to persons who suffer epilepsy. You rock!



    Comment by Tom Waltz — June 18, 2010 @ 2:33 AM

    • WELCOME! (BTW, what is the ETP blog???) And thanks for the compliment. Sometimes I feel like I’m blowing in the wind, working 6-8 hours a day. But, regardless, it’s extremely gratifying.

      Below is a fascinating article about epilepsy and employment, written by the Robert S. Fisher, M.D., Ph.D.
      Editor-in-Chief of epilepsy.com.

      Basically, what he says is: ”Most people with epilepsy can and do work, but having epilepsy doesn’t make it any easier, especially in the current economic climate. What do you need to disclose when you apply for a job? What are your rights if you are let go because of seizures or your employer’s fear of you having a seizure? Are there some jobs that you cannot do?”

      For the answers, click on http://my.epilepsy.com/node/987840 I think you’ll find them quite enlightening…


      Comment by Phylis Feiner Johnson — June 18, 2010 @ 5:28 AM

  5. Thank you Phylis, I read the article. I know it is illegal for employers to ask for health problems. Where I live, if you do not answer you do not get the job.

    I applied to be a “greeter,” It is a 4 hour job a day. I was turned down. With all of my seizures, I do not know if I could have kept the job.

    The greeters are hired as elderly people. They must have health problems.


    Comment by Ruth Brown — June 19, 2010 @ 7:15 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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