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.

19 Ways To Get Involved in Dysautonomia Awareness Month In October

Did you know that October is Dysautonomia Awareness month? Raising awareness is so important for Dysautonomia patients. Even though there are a lot of us, there are so many people (including doctors) who don’t know anything about Dysautonomia. The Dysautonomia International Conference had an excellent talk on things you can do to raise awareness. Many of these ideas are from Dysautonomia International and I threw a few in there as well. So here are some things you can do to get involved and raise awareness from most involvement to least (I haven’t done most of these so it is my perceived involvement/ difficulty):

1. Plan a Run/Walk**

This is definitely not something that happens overnight. I suggest planning ahead by months. If you want to hold a run or walk in October start planning now! These events raise a lot of money, but also include a lot of work and money invested.

2. Hold A Concert**

If you are a band, know musicians, and can get a venue nailed down concerts can be a great way to raise funds. This is another event that involves a lot of pre-planning.

3. Plan a Dance Marathon**

I am currently planning one of these for October in Denver. You have to use some of your own money to find a venue but beyond that it hasn’t been too difficult yet. If you live close (or even if you don’t) I would love your help.

4. Plan a Restaurant Night*

A lot of restaurants will hold fundraiser nights. Basically you invite people to the venue and a percentage goes to that fundraiser.Depending on the restaurant it may take more or less involvement.

5. Run/ Walk/ Knit/ Dance and Have People Pledge*

If you can run, walk, dance, bike, swim, or even knit for a while people may pledge money to your cause. For example, I have seen people pledging $5 for every mile you run. This can also work even if you are entered in an already established race. If you are running make sure and get an emu to follow you. They are great motivation- just look at this kid.

run like youre as terrified as this kid

6. Bowling/ Game Center Fundraiser*

Many bowling and entertainment venues such as Dave & Duster’s offer opportunities to rise funds as well.

7. Submit a Proclamation**

Getting politicians on your side tends to make things easier. Request a proclamation declaring October as Dysautonomia Awareness month.

8. Submit a Lighting Request**

This year some huge monuments are going to represent Dysautonomia awareness. For example, Niagara Falls will be lit up. Submit a request in your city. Do it soon; time is running out.

9. Plan a Bake Sale*

Everyone loves cake (unless it is that awful movie). Have your friends and coworkers bake and donate goods. Then sell them to raise money.

10. Plan a Dress Down Day*

If you work in a larger office dress down days are a great way to raise money. Talk to your boss about having a fundraiser where people donate money in exchange for being allowed to “dress down.”

11. Have a Fitness Class Host*

Some fitness classes and gyms will hold fundraisers in the form of workout classes.

12. Host a Trivia Night*

Around the country the trivia company Geeks Who Drink hold events called “Quiz for a Cause.” Teams pay to play, they receive a small cash prize, and most of the money goes to your fundraising.

13. Get the Local News to do a Piece on Your Efforts*

If you are planning an event you should definitely try to get local news stations to do a piece on the event. Even if you are not you can try to get them to write an article discussing your struggle and that October is Dysautonomia Awareness month.

14. Share Your Story

Writing down your story or sharing a video on Youtube is a great way to raise awareness and understanding. 

15. Dye a Streak of Your Hair Turquoise

Dying your1655583_10152423633392143_1345278656411378447_o hair, whether it is a streak or the entire thing, can be a good way to raise awareness. Make sure to tell people why it is that color when they ask (it gets old fast) or print out a brief explanation and hand it to them. My hair was turquoise for a bit but I wasn’t good about awareness. Having something you can hand to people is much easier than trying to explain POTS & trying to raise awareness on the spot.

16. Turn Your Mobility Device Turquoise

It doesn’t have to be permanent. For Dysautonomia awareness you can use tape, spray paint, or streamers to turn your wheelchairs and canes turquoise for awareness.
17. Attend an Event

If you can’t plan an event try and attend one if it is at all close. Maybe even consider a short road trip (if you are healthy enough) to support on of your fellow POTSies. Meeting people who support you and understand is really inspiring. Here is a list of some events.

18. Change Your Profile Picture

Change your picture on social media so that it is tinted turquoise, has an awareness ribbon, or wear awareness shirts.

19. Wear a Turquoise Article of Clothing All Month/ Awareness Gear

Some people wear a colored scarf or colored dress all month to raise awareness but it doesn’t have to be something large. For example, unless I am working I usually wear the same pair of shoes. My parents gave me turquoise shoelaces and I will change them in October. Little things can make a big difference for awareness too!

**These events take a couple months of planning or need to be done a couple months in advance. Begin during the summer or at least by August.

*These events likely take a month or month-and-a-half of planning. Start in at least late August/ Early September.

Any other ideas? Share with us and I will add them to the list.