A month ago, we were still in the throes of planning our first conference on psychogenic non-epileptic seizures (PNES). We had PNES brochures printed up, we had ordered many copies of “Psychogenic non-epileptic Seizures: A Guide” to give out at the registration desk, we had purple and teal charms ready, and all our speakers were working hard on their lectures. We suspected that it had the potential to be a historic event in which for a first time in the US, PNES was properly highlighted and those who live with it were given a place to speak up and come together as a community. Registrations were coming in from across the US and even from overseas.
Finally, the day arrived and by 9AM it was clear that the day was going to be all we had hoped. We had been given one of the larger conference rooms and when I walked in, I was delighted to see it was full and those in attendance were, to mention just a few, from Maine, Iowa, Washington, DC, Kansas, the Netherlands, and of course New York and New Jersey.
The lectures about diagnosing PNES through Video-EEG monitoring, how neuropsychological testing is used in PNES assessment, uses of relaxation and mindfulness and prolonged exposure treatment to treat different problems in PNES, taking care of the caretaker, and wellness and quality of life in PNES provoked insightful and thought-provoking questions.
At the end of the day, professionals, caretakers and patients held an informal meeting and some of the biggest challenges patients and their families face were discussed in the group. Important suggestions were made about how to begin addressing the lack of education that health professionals have about this condition, discrimination at work and schools, and the need for streamlined referrals from epilepsy centers that do not have PNES treatment programs. It was also explained to the group how the Epilepsy Free Foundation now provides prominent services and resources for persons diagnosed with PNES which is a first too.
We left the meeting with a renewed sense of purpose and hope, energized and with an understanding that by joining forces between patients, caregivers and health professionals we can make a difference. Stay tuned for some of the projects that will grow out of this historic day.