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Seizure stars: John and Angel Dougherty fighting for psychogenic non-epileptic seizures awareness

December issue's Seizure Stars are John and Angel Dougherty. Angel lives with Psychogenic non-epileptic seizures (PNES); she and her husband have worked tirelessly over the past 2 decades to find a cure for her and to raise awareness about PNES.  In fact, they created the first US website on PNES and John also wrote a book that is a guide for patients and loved ones "Lowering the Shield: Overcoming Psychogenic non-epileptic seizures." For these reasons, Angel and John Dougherty are our Seizure stars this issue.

How did seizures come into your lives? 

Angel:
The seizures began for both of us in 1993, when flashbacks of my terrible sexual abuse surfaced. But the first seizure that I remember was during the sexual abuse that happened when I was very young. This is how the dissociative seizures work, they happened during the original abuse, and again later during the flashbacks in adulthood. Many people don't realize that this is the way PNES works for many of us. I believe that the seizures are actually a survival mechanism. At first, I didn't know in adulthood that I had seizures as a child, but I began to remember the abuse and had confirmation from a sibling that I did have seizures when I was young due to the experiences I went through. 

John:
I remember Angel's seizure in 1993 very clearly. It was one of the worst days in my life, seeing her suffering in that way. I had no idea what was happening and called 911 fearing that she was dying right before my eyes. I felt helpless and that I was losing my best friend and my love. 

How did these seizures change your lives?

Angel:
I had no idea at the time what these seizures were all about. I could no longer drive and was in danger of falling or burning myself while cooking, and all the other things that seizures cause. I once burned my arm with a curling iron and cut myself while washing a knife, etc. I felt very frustrated by the lack of almost no information about PNES. I also lacked the Internet back then. 

John:
I had to travel for my job and was not able to work for a while, but when I had to go back to work for financial reasons, I was constantly afraid of not being there to help her. This was agony for me.

What sorts of treatments did you receive?

Angel:
After being wrongly diagnosed with Epilepsy, and given anti-epileptic drugs (AEDs), the seizures continued, I soon began to understand that my seizures were related to my early childhood sexual abuse and realized that I should see a psychiatrist, which I did, and after seeing several and receiving no help at all, I began to do the work on my own. They were avoiding talking with me about my abuse, which was not helping me to resolve it. 

John:
During my search for information and treatment providers for Angel, I found John Barry MD of Stanford. He is one of the top experts in PNES. Angel was able to get in to see him and was treated with his self-hypnosis technique which has been the most effective treatment so far, one that she uses to this day. This is how she is overcoming the seizures, and now only has infrequent and brief periods of missing time.  

What sort of advocacy work have you done over the years?

John and Angel:
We set up the very first website 100% dedicated to PNES and helping survivors. Unfortunately, due to personal work load and other factors, we had to abandon the website some years later. We now maintain a Facebook page for our book where we post our insights. 

We have also helped many patients who have contacted us to better understand what PNES are and provide guidance on the steps to take to recover and heal. We have tried for many years to move the National Association of Epilepsy Centers (NAEC) to do more for PNES patients. Although we have not been successful in having the NAEC act yet, we are continuing to contact them about this and hope soon they will start making the necessary additions to their website and offering resources to their members. Over the years, we have also contacted numerous professionals in the epilepsy and psychological community to spread the word about PNES. 

What prompted you to write your book "Lowering the Shield: Overcoming Psychogenic non-epileptic Seizures"? 

John:
I wrote the book with Angel primarily because we didn't want others to go through what we did, which was a drastic lack of information about PNES in general and availability of treatments. Angel also wanted to get the word out as to why PNES occur, which is often due to childhood sexual abuse. The link to the Kindle version of the book is: https://www.amazon.com/Lowering-Shield-Overcoming-Psychogenic-Nonepileptic-ebook/dp/B00BTMB38G

What other advocacy activities are keeping you busy and do you see down the line?

John and Angel:
While available time is still an issue for us, we try to contribute through our Facebook page and directly responding to inquiries we receive from those impacted by PNES. We also plan to fully support the Northeast Regional Epilepsy Group activities and research in any way we can. The way we see it, your work and online resources (www.nonepilepticseizures.com) are essential for current information and support for the PNES community. We are grateful for your efforts and generosity.

Well, we are grateful to you, Angel and John for being trailblazers in the field of PNES and for your continued efforts in raising awareness and lobbying for PNES and for always being open and willing to help newly diagnosed persons who contact you.  You certainly deserve this Seizure Star recognition! 

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