The year 2014 has been very important for the raising of awareness and education about psychogenic non-epileptic seizure (PNES). On January, Psychogenic Non-epileptic Seizures: A Guide was published and has now sold almost 400 copies. Some patients and family members decided to share this book with their neurologists and mental health professionals and wrote me to say that the health care professionals have appreciated the information and that it has led to a change in their treatment. One hospital in the Midwest recently contacted me to let me know they planned to purchase 200 of these books to give out to their newly diagnosed PNES patients. http://www.amazon.com/Psychogenic-Non-epileptic-Seizures-Lorna-Myers/dp/1492881414/ref=sr_1_2?s=books&ie=UTF8&qid=1390824900&sr=1-2
Just months ago, a Facebook movement was started by one gentleman who wondered why PNES did not have awareness colors. After some thought, he proposed the colors of PNES could be teal and purple to represent the combination of PTSD and seizures. The colors were embraced by the PNES community on Facebook and one friend on the Psychological non epileptic seizures page began using her artistic skills to create purple and teal images. These went viral and have been spreading PNES awareness over the past few weeks. https://www.facebook.com/pages/Psychological-Non-Epileptic-Seizures/144184112260986
This year, blog posts on PNES or Non-epileptic Attack Disorder (NEAD) have sprouted up in Hawaii and the Netherlands written by persons with PNES sharing their experiences. Another person living with PNES contacted me a few months back to discuss a book project in which testimonials of people living with PNES would be presented. I thought the project was fantastic and I agreed to collaborate. The goal will be to present the total picture of someone who lives with PNES: who they were before the PNES, how PNES came to occur in their lives, how they live now, and more. I will write a whole blog post on this in the near future.
And on September 20 in Mahwah, NJ the Northeast Regional Epilepsy Group (NEREG) will be holding its very first conference on PNES. This has the potential to be a historic event in which the serious and disabling condition of PNES is properly highlighted and those who live with this are given the voice they deserve. Registrations have come in from across the US. There are registrations from as far off as the Netherlands! Some of the main PNES advocates have let us know they plan to be at it. We hope you will choose to attend. To register: http://nonepilepticseizures.com/epilepsy-psychogenic-NES-events-news-conference-2014-09-20.php