My Experience At The Dysautonomia International Conference 2015

The Dysautonomia International Conference was in July in Washington DC. I was able to attend this year and it was a really impressive and informative conference.

I flew to Dulles, Virginia a day early from Denver because I have never been to Washington DC and wanted a day to recover from traveling. Friday my parents and I drove around DC checking out monuments and museums. I stuck to my wheelchair so I would still have some spoons for the conference. 

Friday & Conference Attendance

Friday night we checked in. We got our name tags, a flash drive with some of the presentations, water, a pen, a bag, salt packets and some product used for dry mouth I can’t recall the name of. Next I played a “breaking the ice” game that definitely was directed at teens. At first I was worried because the conference felt like a younger crowd and I had doubts that I would have anything to talk about with a bunch of teens. These aren’t your average teens. Young women with POTS can be so mature. I spoke with one girl who was only fourteen but was more mature than some people in their twenties. I found myself really amazed by this a few times throughout the weekend. Going through something hard when you are young can really age people.

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The conference was primarily women, patients and caregivers. There were about 450 people and over 100 medical professionals. Most of the patients there were young women, many in their teens. There were some parents there without their kids and some patients there by themselves. Many others had their whole family supporting them at the conference.

I attempted to eat at the hotel restaurant (decent food overall- gross parfaits) and then went back to my room to get to sleep early for the super busy next day.

Saturday, CME, & Keynote

Saturday during the day the talks started bright and early. I heard really inspirational talks and presentations filled with more information than I could scribble down wildly. I will write more on these presentations in the future.

Lunch was arranged by region in hopes that you would meet other people close to you. The Continuing Medical Education (CME) and patients were combined at this point. CME had its own presentations geared at medical professionals throughout the conference. I went to a few CME sessions and was surprised by how much overlap there was in topics with the patient’s presentations. In fact, the patient presentations (presentations aimed for patients are caregivers) were even better than the CME presentations and that seemed to be to the consensus among medical professionals.

I was repeatedly amazed at the conference by how knowledgeable other patients, parents, and caregivers were. There were points, as there always are at this sort of thing, when people stood to ask a question but actually shared their life story. It always happens at this sort of thing. However, most of the questions were really well thought out and indicated a higher understanding of some more complex Biology.

Unfortunately at lunch Colorado was squished in with California and there was no one else at my table even remotely close to Colorado. They did a great job with the food and dietary needs. There definitely wasn’t enough salt (but is there ever). During the lunch break there was also a vendors fair. Dysautonomia International was selling awareness gear, NormaLyte, medical testing facilities, and books to be sold and signed. After the afternoon break there were even more presentations before the awards ceremony.

The keynote speaker was amazing. Dr. Lisa Sanders (real live House, MD) spoke about tough diagnosis, a struggle we all relate to, and was a wonderful speaker with interesting stories to share. Her book is now definitely on my to read list.

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It is never lupus.

Next, the physician of the year award was given to Dr. Blair Grubb. A video was shown dedicated to his wife who he lost this last year. It was absolutely beautiful and extremely sad. He didn’t speak, but it was beautiful and I don’t think he needed to.

Volunteers of the year Sarah Mendelowitz and Hanna Gully were announced and the people who ran the conference as well. They also really helpful in the talk about advocacy.

Meanwhile, there was more food my stomach wasn’t going to let me eat, drinks, and a very small dance party in the middle of the floor. Mostly teens, it was adorable. I didn’t stick around through much after that; I was exhausted from the day before.

Sunday & Lobby Day

The next day started bright and early with more talks and presentations. Later in the day we had a short lunch break and then more talks. About midday when I wasn’t too interested in the topics I ducked into a room near the presentations to participate in Mayo Clinic’s research. The research involved the Beighton Test (surprise I still have hEDS), questions, an examination of your legs for blood pooling, a blood draw, and a lying and standing blood pressure and heart rate monitor. It was nice to feel that I was contributing to learning more about POTS.

After the last presentation there was a final question and answer panel. It was a little crazy. A lot of the questions were great, some were not. A lot of the answers were great, or some went on and on for fifteen minutes saying nothing.

At the end of the day Sunday there was a training for Lobby Day which just under 100 people participated in. With how hot Washington DC was and how short on spoons I was doing I decided to skip the Lobbying. Honestly, I was amazed that I didn’t have to skip more presentations. It was a really long couple of days, especially after traveling with POTS. I opted for swimming and talking with some other POTS patients before I went back to my room for a movie.

Standing ovations were given multiple times at the conference. Everyone certainly deserved them- I just found it funny at a Dysautonomia Conference.

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Oh good we are standing again.

The overall feel of the conference was one of hope, support, and positivity for the future. I hope to be able to attend again. The people who ran the conference were really amazing and did an absolutely wonderful job.

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