Guest Blog: What Really Happened at the Dysautonomia International Conference

As you may have guessed a few, couple, tiny things prevented me from making it to the Dysautonomia International Conference this year. That being said, I’m so into the work that DI does and LFB had eyes on the ground to get the scoop on what went down. (You know, aside from Haley Faulkk’s non-stop and much appreciated FB feed.)

Thanks to Shannon Linford, an intern at Dysautonomia International, for sharing her story!

Dysautonomia International Interns with Patient Advisory Board Member Crista Procopio (L to R, Alex Soybel, Crista Procopio, myself, Jennie Hook)

Dysautonomia International Interns with Patient Advisory Board Member Crista Procopio (L to R, Alex Soybel, Crista Procopio, myself, Jennie Hook)

July 11-14 was the second annual Dysautonomia International Conference & Lobby Day in Washington, D.C.  This year I was lucky enough to be one of the organization’s interns and I had the chance to help with the inner workings of the conference.

Last year I attended the conference as a newly diagnosed POTS patient. I had been suffering from symptoms for nearly 10 years and finally had a name to what was wrong with me. I left that weekend standing a little taller, feeling a little lighter, and understanding my body better than ever. This year I got to help facilitate the same opportunities for others.

The entire atmosphere of the conference was one of support and understanding. In our board room where materials were arranged, prepared and organized, I immediately felt bonded to people I was meeting for the first time as we got to work. Every fifteen minutes while we did things like stuffing goodie bags, someone would ask, “Is everyone hydrating? Does anyone need to take their pills?”

The amazing thing is, I saw the exact same thing with all of the conference attendees—everyone was looking out for each other. I saw friends share salty snacks with each other. I saw parents bring their kids their meals at lunch if they didn’t feel well enough to stand in the buffet line. I saw people get down on the floor with each other to get the most comfortable blood flow.

Screen Shot 2014-07-24 at 10.04.37 PMThe doctors were no exception to this spirit. I helped run the registration desk for the speakers and the physicians attending the Continuing Medical Education program, and when I had time to ask them about their backgrounds and where they were from, they were just as interested in me, how I was and how I got involved with Dysautonomia International. I even saw doctors spending one-on-one time with patients in the hospitality suite, addressing their concerns and advising them as to what steps they should take next in their journey with dysautonomia.

While patients on Saturday attended sessions like “How To Be Your Own Best Advocate” presented by Elyse Schwartz, MSW, “Living Well With Chronic Illness” by Dr. Morwenna Opie, and “Mast Cell Dysfunction in Dysautonomia” by Dr. Hasan Abdallah, doctors participated in our first Continuing Medical Education program. Just like the patients, we had doctors from across the country in attendance to spend a weekend of their time learning about dysautonomia so they could better treat their patients. Because of these doctors, we are going to hear fewer stories about patients going years undiagnosed and therefore untreated. Because of these doctors, patients are going to start reclaiming their lives. Because of these doctors, we can start finding more answers!

Saturday night was my favorite night. We held our Awards Banquet and heard from

The Virginia Group — Dr. Kamal Chemali, myself, a member from Representative Jim Moran’s office and Diane Boughton. (Not pictured is Pamela Robertson, one of our group members who took the picture)

The Virginia Group — Dr. Kamal Chemali, myself, a member from Representative Jim Moran’s office and Diane Boughton. (Not pictured is Pamela Robertson, one of our group members who took the picture)

our Keynote speaker, Jenni Prokopy from She spoke to us about acceptance and making our illness our friend so we don’t lose our energy fighting something that isn’t going anywhere. Acceptance isn’t defeat, it’s learning to live and work with what we are given.

Something really amazing happened after dinner, though. Even though dysautonomia kicks our butts and dancing is really not an easy thing when your heart rate sky rockets just from standing, people got out on the dance floor. And if people weren’t on the dance floor, they were mingling together at tables laughing or at the photo booth outside taking goofy pictures. It didn’t look like a Dysautonomia Conference, it just looked like a gathering of people having a fantastic time. Because we had cultivated such a strong atmosphere of understanding and support, we were all able to be our truest selves and not feel defined and constrained by our dysautonomia. Sure, we were in pain. Sure, we had our symptoms. But we were having fun!

We kept the ball rolling on Sunday with sessions such as “Chronic Pain in Dysautonomia” by Dr. Paola Sandroni, “Sleep Disorders & Dysautonomia“ by Dr. Alan Pocinki, and a panel on brain fog by Dr. Julian Stewart and Amanda Ross, a young researcher from Dysautonomia International’s Patient Advisory Board.

In between and during sessions all weekend, attendees and volunteers could also participate in a research project led by Vanderbilt University in which they were looking for antibodies in POTS patients that could be the cause of cardiovascular symptoms.  The phlebotomists from Dr. Hasan Abdallah’s office were in charge of the blood draw, and were it not for them, I personally would not have been brave enough to give blood on my own—they are great at drawing blood and even better at distracting patients.

Sunday’s sessions were wrapped up with a Q&A session with a full panel of doctors—some of whom were willing to risk missing their flights to ensure they could stay and field any missed questions from patients. Their dedication to this conference has been nothing short of extraordinary.

100 attendees stayed for Lobby Day training that evening. We were lucky enough to be trained by an expect in the field, Jonathan Kessler, husband of Dysautonomia International Vice President and C.F.O., Ellen Kessler. His enthusiasm and experience helped us get excited and feel confident about the challenge ahead of us—getting members of Congress to listen to the issues impacting people with dysautonomia. Each attendee was assigned to a group according to state they lived in. The groups met together and made a game plan for the next day so we felt as prepared as possible.

Screen Shot 2014-07-24 at 10.04.20 PMOn Monday morning, we loaded onto two buses to make our way downtown. We spoke to 50 Senators and Representatives about the need for insurance companies to reimburse autonomic testing, to keep midodrine on the market, and to increase NIH funding for research on dysautonomia. Most groups reported having great meetings—the worst thing that happened that day was the oppressive but quintessential Washington, D.C. heat and humidity.  We all made it through Lobby Day without any fainting, but even the doctors looked like they were going to faint by the end of the day.

I still can’t believe how much we accomplished in those four days. And even though it was exhausting, I can’t wait for next year. I can’t wait to see people giggle with happiness when they reunite. I can’t wait to see parents who look less worried and a little more hopeful. I can’t wait to see patients who feel more empowered. I can’t wait to see doctors educate other doctors. I can’t wait to welcome more people into the Dysautonomia International Conference Family. And I can’t wait to do the Cha-Cha Slide with a ton of POTsies on the dance floor.


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Available Soon

Videos from the 2014 Dysautonomia International Conference will be available soon. They will be free to conference pass holders and available for a reasonable fee to the public.  Be sure to follow Dysautonomia International on Facebook to find out when the videos are release.

 Get Involved

The best way to get involved in Dysautonomia International is by fundraising and raising awareness in your own community. A great way to fundraise is by hosting a Cupcake for a Cure bake sale. Reach out to your friends, family and doctors to teach them about Dysautonomia. Dysautonomia International has educational materials you can hand out here.

Learn more at Dysautonomia International.