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NSDF recognizes June as Epilepsy Stigma Awareness Month

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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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

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