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  • 1.  How can we open eyes and educate others to the reality of living with neurological disorders such as autism, epilepsy, multiple schlerosis?

    Posted 03-11-2022 12:54
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    Despite my education and work experience, I have been denied insurance and several good jobs.   Denial of a safe and secure life is too common for people with expensive medical conditions in America.  How can we change this?  Please read this article to gain some knowledge.   Thank you.

    https://www.cdc.gov/media/pdf/releases/aag-epilepsy-2017_508c.pdf

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    Elizabeth Wyman (she, hers)
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    aag-epilepsy-2017_508c.pdf   1.00 MB 1 version


  • 2.  RE: How can we open eyes and educate others to the reality of living with neurological disorders such as autism, epilepsy, multiple schlerosis?

    Posted 03-15-2022 09:44
    Hi, @Elizabeth Wyman - thank you for sharing this info. Very informative. As to your question about how we can change this... it's a really good question! I think that education is a huge part of it.  It reminds me of this pie chart I came across a bunch of years ago: 

    I consider myself fairly knowledgeable about a few things, and there's a slightly larger piece of things I know I don't know - but the entire rest of the chart is things I don't know I don't know.  It's why I love sharing ideas and telling stories with each other.

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    Stay awesome,
    Quinn
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    Original Message


  • 3.  RE: How can we open eyes and educate others to the reality of living with neurological disorders such as autism, epilepsy, multiple schlerosis?

    Posted 03-16-2022 08:12
    Thank you so much for sharing @Elizabeth Wyman  and @Arnie Grahl  - I will definitely be rocking my purple in November!  I suffer from an extremely rare condition called Trigeminal Neuralgia and have had to learn how to be my own medical advocate over the past 10 years.  I also have long-term chronic lyme disease and this is not covered in most medical plans and I pay a lot of out of pocket cost for most of my medical treatments and IV treatments that I need to just feel healthy and "normal".  I often ask the question "How can I\We change this?" and I have no answers, but I am thankful that people keep asking this question!   I think the more keep discussing, we will get to a possible answer to this and other questions that affect those of us living with common and rare conditions - or at least we will have more listening.  It saddens me to hear that those with even more common conditions struggle as I often can dismiss my frustrations to the fact that I have a rare condition that even many doctors are not aware of.... there has to be a better answer here.   October 7th is Trigeminal Neuralgia Awareness Day Day and Teal is our color. :-)  ​​

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    Mandi Ginn-Franz
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    Original Message


  • 4.  RE: How can we open eyes and educate others to the reality of living with neurological disorders such as autism, epilepsy, multiple schlerosis?

    Posted 03-16-2022 09:33
    Cool. That is so cool to learn about your condition. Well, cool is probably the wrong word. I am really sorry for the difficulties you have to go through. Thanks so much for sharing. This discussion would be great if even more people shed light on rare or little known conditions. Education and awareness are a wonderful thing. I will try and remember to wear Teal 7 October, for sure.

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    Arnie Grahl
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    Original Message


  • 5.  RE: How can we open eyes and educate others to the reality of living with neurological disorders such as autism, epilepsy, multiple schlerosis?

    Posted 03-15-2022 12:13
    Thanks for sharing this pdf, @Elizabeth Wyman. I'm not sure I know the answer to your question, either, beyond encouraging people to support organizations like the Epilepsy Foundation and visit their website to learn more. I admire your desire to get more people to understand not just this condition but a lot of neurological conditions..
    My daughter is epileptic, a part of her larger condition of CDKL5. Dealing with her seizures since she was just a few months old has been a learning process for my wife and I. My daughter is now 19, and her seizures are better, controlled by medicine and the Ketogenic diet. As with a lot of these conditions, epilepsy touches people in a wide variety of ways, either as part of other disorders, or as its own condition. I'm not sure I would know what I do know about it, and I could know more certainly, if it wasn't a part of my daughter's condition. But it is great to draw awareness to it in whatever ways we can. Information like 65 million people have epilepsy, 3.4 million of those in the United States.  A third of those live with uncontrolled seizures despite taking medication.
    November is National Epilepsy Awareness Month, and purple is the color the campaign uses in its publicity. We should do a blog post here on Connect that month!​​

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    Arnie Grahl
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    Original Message