Jun 012013
 

Nationa Seizure Disorders Foundation

June 2013 recognized as Epilepsy Stigma Awareness Month by National Seizure Disorders Foundation(NSDF) . In alignment with this, we will enlighten your mind to the definition and types of seizure-related stigma as well as how you can overcome seizure related-stigma in your life and help us eradicate seizure-related stigma in the nation this month. When you have seizure related stigma questions or issues, I encourage you to reach out to National Seizure Disorders Foundation for help either by leaving a comment below or emailing terrifictonya@nsdf.us for guidance on how you can begin to eradicate seizure-related stigma.

  • STIGMA – A mark of disgrace associated with a particular circumstance, quality, or person

  • SEIZURE-RELATED STIGMA – A mark of disgrace associated with seizures,seizure disorder,seizure survivor, seizure caregiver.

Types of seizure-related stigma as defined by National Seizure Disorders Foundation

  • Thought Related: the most subtle yet most difficult to eradicate, the false beliefs our own thoughts tell us about seizure disorder and seizures we experience either personally or when caring for a seizure survivor. The most common thought related stigma is emotional/psychological verbal abuse to oneself and others.
  • Self Induced: the actions that result from thought related stigma. These actions include isolation, physical abuse, abuse of substances, and lashing out at our caregivers.
  • Closed Community: This type of seizure related stigma occurs within the biological family unit and close circle of friends. More often than not, this stigma is rationalized as people “just joking” with the seizure survivor or caregiver. This leads to negative energy, increase in seizure activity, negative seizure management, and an increase of self induced stigma.
  • Open Community: This type of seizure related stigma occurs in the open, throughout society, in the classroom and workplace. This type is the most often publicly seen and felt stigma. This is the stigma many are fighting to eradicate.Have you experienced seizure-related stigma? You are not alone. Millions across the country and across the globe experience seizure-related stigma of one or more types during their journey with seizures. Gaining support through a positive community helps you understand and eradicate seizure-related stigma. National Seizure Disorders Foundation provides such support online through NSDF Community at FaceBook and offline through extensive one on one phone calls and email. As NSDF grows, so will the possibility of small positive live support groups in your area. Please let us know if you are interested.

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For possible interview on our show, please comment your interest below!
In addition, arrange an awareness event in your area. This event is limited only by your own imagination. National Seizure Disorders Foundation is here to help you plan any awareness event related to seizures and National Seizure Disorders Foundation, including an event raising awareness for seizure-related stigma.
Have you a story to share related to eradicating seizure-relates stigma? NSDF is honored to help you share your story. We will guide you through the process and publish your story on our website for viewers around the world to see your important efforts. Leave a comment below letting us know you want more information on sharing your seizure stigma related story or email your story to terrifictonya@nsdf.us

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A moment of gratitude for a growing group ‘Living Well with Epilepsy‘ for prompting Stigma Awareness Month. For more on Living Well with Epilepsy and their efforts to raise awareness of stigma this month, please click HERE (http://livingwellwithepilepsy.com/2013/05/june-is-epilepsy-stigma-awareness-month.html)

Are you ready to help National Seizure Disorders Foundation eradicate seizure-related stigma? You have options today:

  1. Use the handy donate button on this page for donations of $1 or more.

  2. For donations of $100.00 or more, or if you prefer to mail your donation, send a check or money order to:

    National Seizure Disorders Foundation 228 College Street Burns TN 37029

Money donated will go to NSDF programs currently eradicating all forms of seizure related stigma including but not limited to:

  1.    Erace Epilepsy Stigma  – Awareness marathon in November(Nashville TN) with Glenn Fenster as NSDF marathon runner raising awareness every mile he runs.

  2.    Seizure Service Dog Placement – NSDF places trained seizure service dogs with qualified survivors nationwide

  3.    Empower U – I take seizure survivors on a personal journey from victim to victorious teaching them their own true value, empowering them to live a higher quality of life while on their journey to positive seizure management.

  4.    Caring 4 Caregivers – NSDF offers caregivers specialized support and resources helping them become less stressed, more effective family and professional caregivers.

 Now you are prepared to take action this month to recognize and eradicate seizure-related stigma! Always remember, you are not alone. National Seizure Disorders Foundation is proud of any positive effort you make this month to create seizure-related stigma awareness. Mark your calendars for next year, we’ll plan a contest and have more fun!tonya-signature1

  8 Responses to “NSDF recognizes June as Epilepsy Stigma Awareness Month”

  1. My 9 year old daughter was just diagnosed with a seizure disorder. I feel so lost right now I don’t know what to do. She is getting appointments with a neurologist, hopefully within the next couple of weeks. I honestly know very little about the disorder. I need help

    • Karyn,

      NSDF is here to help you. I will be replying through email for personalized support. Know that you are not alone. You are on the right track for her treatment. We will walk this journey together. Reach out as often as you need.
      We walk together -

      Tonya Heathco
      National Seizure Disorders Foundation

  2. Stigma caused so many roadblocks in my life because I was more concerned about how people observed me. I lost friends , isolated myself and did not participate socially in many activities, I had a hard time accepting that I had seizures and for years I was denial. I broke through that barrier by becoming healthy , running marathons, educating myself about seizures and others . I am an advocate now and I speak publicly at the New York State Capital for all to benefit for funding and convincing our representatives to pass bills that support persons who have seizure disorders , people who treat people with seizures Nurses, Teachers and Caregivers. I became stronger and more confident once I accepted that I had a seizure disorder and want to strengthen those who also have the disorder.

    • Steven,
      We at NSDF are honored to know you. Your experience in life is a great testament to what one can do when passion is stronger than self. I look forward to learning more about you and working closely with you to increase the quality of life for millions across the globe.

      Acceptance is key to healing. I am glad to know you reached a place of Peace through acceptance and honored to know you are one out there advocating for millions.

      Stay in Touch -
      Tonya Heathco, CEO
      National Seizure Disorders Foundation

    • Stephen,

      Your acceptance and advocacy is pertinent to helping others including ourselves, people with a seizure disorder.

      You mentioned that you speak at the NY Capital to help our elected officials become aware of how a seizure disorder can impact our lives; I think that is so important and very empowering for you. I am originally from NYC and went to SUNY Albany so if you ever need any help, advice or someone to go with you to Albany I am more than willing to do so. I was diagnosed with epilepsy my first semester freshman year at SUNY Albany and did graduate in four years. I applaud your efforts and hope that you have been successful in your endeavors. It is because of dedicated people like you whom inspire others to make a change. I would love to know how successful your efforts have been as well as how receptive our NY officials are when you speak about epilepsy/seizure disorders. Again, please get in touch with me if you ever need “back up” when going to Albany.

      Kerri Croake, VP & COO
      National Seizure Disorders Foundation
      kcroake@nsdf.us
      917.385.9775

  3. Tonya,
    Thank you for supporting our efforts in this new initiative. The initiative was in response to a need expressed on social media. I’m so glad to have you on board!
    Jessica Keenan Smith
    Founder
    http://livingwellwithepilepsy.com

    • It’s an ongoing goal of National Seizure Disorders Foundation to see that every support group and foundation related to epilepsy /seizure disorder work together to eradicate stigma and help 65+ million people lead a higher quality of life while gaining positive seizure management. Serving with you is an honor for NSDF and me.

      Peace-
      Tonya Heathco,CEO&Founder
      National Seizure Disorders Foundation

  4. [...] Read our article on stigma;what it is, how to recognize different types, and how to overcome, HERE RESOURCES for [...]

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