Very much like last year at our first annual PNES conference, this year’s PNES conference far outdid our expectations. The audience of patients and loved ones and the doctors who were present left feeling energized and hopeful, learned a tremendous amount from each other and will go on to work on projects this coming year.
We had 87 attendees on Saturday! Where were they from? Our “local” guests were from all over New York, New Jersey, Connecticut, and Pennsylvania. I placed apostrophes around the word local because some of our locals drove up to 6 hours because these states are huge. And then we had guests from Louisiana, Ohio, New Hampshire and the Netherlands to name a few of the ones who came from far away!
Dr. Gaston Baslet gave a very informative explanation of the existing treatments for PNES and what is on the frontier. It was eye-opening to many to see the research that is being worked on and some of the recent publications that have come out. Dr. Christos Lambrakis provided an excellent explanation of how PNES is diagnosed. When he finished, he had explained this so well that one of the questions he was asked: Why weren’t you the doctor who came in to my hospital room to tell me my diagnosis? The person who asked shared how her diagnosis had been presented to her and how hurtful it had been in contrast with Dr. Lambrakis’ explanation. Urmi Vaidya-Mathur, LCSW spoke about how the important topic of how the caretaker can care for her/himself and during the day, I gave 3 talks: an introduction to PNES-a kind of FAQs of PNES, a lecture on trauma and PNES: Treating PTSD with exposure therapy and a third talk on how to maintain your quality of life while living with PNES.
And this year, we had a new session that featured the growing PNES movement- PNES advocates and community members Kate Taylor (author of The Color of Seizures), Lee Paolella (designer who raises awareness of PNES through her graphics), Nadine Boesten (PNES blogger from the Netherlands), Eric L. Nelson (PNES advocate and the person who proposed the official awareness colors of PNES) and Millie Nelson (founder of the PNES caregivers Facebook page). These five brave people stood up in front of a whole conference room and shared their intimate stories of how they came to do what they do and showed us the fantastic advocacy efforts in which they are involved. The audience loved hearing this and I hope left with their own ideas of how they will continue to advocate for PNES in their own states and cities.
Although the day had been long, our group stayed behind one extra hour at the end in the form of an informal round table to ask any final questions and to propose ideas. One idea that stood out: the possibility of creating an on-line support group and requests for future conference topics: PNES in children and the elderly.
If you have ideas about future topics for a conference or other initiatives, share them with us here.
The conference was an absolute great success! For me, it pushed my drive even more to get our name out there in hopes of ending the 7 years it takes to get a PNES diagnosis and instead have to it take only 7 days. It was so therapeutic for us all to get together and take comfort in each other. This was the one time that I was in a room full of people and never once had to worry about being judged for either myself or my PNES! I hope next year we at least double the attendance for conference. I am also hoping that we will have medical professionals present in the audience to learn and listen to all that is to be take in. The Drs were so informative, caring and passionate and we all felt it. I def left there feeling much more informed.
Every illness had patients before it had a name. We are no different. It is our turn to stand up, be heard and make a difference…LeeLee#7daysnot7years #saynotopseudo #kissmypnes #leeleesagg
I was very disappointed, I sent many requests to join the conference and never Received any reply , until the day before the conference. I had never been to the conference and was eager to attend. However after 4 or 5 attempts, I gave up! I’m glad that it was a success. Sorry I was not able to attend. Hope it works better next year
Future conference topic ideas:
1. “How the hell does a PNES “victim” educate providers, eg. PCPs, Psychiatrists, Neurologists, ER doctors etc? and receive respect?”
“Commanding vs Demanding Respect”
2. What about wrongful discharge by an employer because of PNES diagnosis? Are there attorneys who’ve experience with this? Discrimination?
3. “Stigmatization and Discrimination Experiences by medical, employment and social communities with PNES label vs epilepsy” Include individual testimonies.
4. “What do PNES “Lifers” do to Keep Hope alive?”
Include support group resources etc
5. “Survival Tools for PNES survivors”