Eight Things We Loved about the Dysautonomia International Annual Conference

Aug 28, 2023

Eight Things We Loved about the Dysautonomia International Annual Conference

Please enjoy a guest post from Shannon Linford, Dysautonomia International Patient Advisory Board

Dysautonomia International recently held the 11th annual Patient & Caregiver Conference (DysConf), and Vitassium was proud to attend as a platinum sponsor.  Vitassium is a longstanding supporter of the POTS and dysautonomia communities through a partnership with Dysautonomia International, and a portion of every Vitassium sale is given back to the patient community to support research and advocacy. Vitassium even launched at a DysConf back in 2016! 

I was lucky enough to not only attend but volunteer and help facilitate the conference, which took place in Washington, D.C. This was our first conference back in person since COVID began, so it was a little different with new protections in place, but we still managed to have a fantastic time. Here are my favorite parts from the weekend! 

      1. Advocacy Day 

Advocacy Day is one of the hardest things someone can do, even without dysautonomia. You’re assigned several meetings to attend across Capitol Hill, and walking from building to building in the height of mid-Atlantic height-of-humidity summer in business clothes is no small task. Add chronic illness on top of that, and it’s grueling. 

But Advocacy Day is one of the most empowering experiences you’ll ever have, because you get to state your case to your representatives and explain why we need help. And more specifically, why dysautonomia research matters. 

      2. Free samples and swag  

Free water bottle? How did you know that I obsessively collect them?  

Exercise towel? Don’t mind if I do, I’m sweating profusely! 

Cool salt shaker sticker? Aren’t I just the cutest person now! 

Vitassium around every corner? Throw them at me like candy on Halloween, my electrolyte levels have never been more perfect. Vitassium also sponsored the conference hospitality suite, which was stocked with never-ending salty snacks and drinks. 

It’s the best way for me to try out new products, to meet and connect with other nonprofits, learn about cool new tech meant to help me figure out how to care for my body, and talk with really nice people. 

      3. The scavenger hunt 

I was given the task/gift/privilege of facilitating the Teen Programming alongside my pal Emily Birch, and part of that entailed running the annual scavenger hunt.  One of the items was looking for the life-size Vitassium mascot, Dash! 

I run this event every year and what never ceases to amaze me is: 

  • the competitive spirit and tenacity of the teens. (I asked for something with pickles, and lo and behold, within minutes, a girl brought me a platter of pickles from the hotel restaurant.) 
  • the spectacular creativity unleashed when claiming points. (One of the categories was “find me something interesting” and they brought me inventions they made, long expired products found at the bottoms of suitcases and backpacks, medical devices borrowed from strangers)  
      4. Friendship bracelets and craft hour 

A craft hour was a new addition this year, and ever since, I have added at least one hour of arts and crafts into my daily life per week. It’s the way we should be living. 

This was such a needed time for everyone to cool down, get to know each other, and make some very cool stuff. Emily made bracelets for people and I’m keeping mine forever. 

      5. Sessions featuring everything I needed to know, and things I had no idea I was missing. 

One thing I love about the conference line up is that every year it covers the foundation, the information that new patients need covered (overviews of dysautonomia, what testing is needed to figure out what type you have, etc.). But there’s always new material every year about something I’ve never even heard or thought of.  

      6. The dance floor 

It’s very unusual to watch some of the sickest people you know dance the hardest, but at DysConf it’s unsurprising because this is the dance floor where you can walk on, dance for 30 seconds, walk off, and everyone understands.  

 It should absolutely be noted that the evening ended with a conga line, and I can’t think of anything more appropriate. 

      7. Doctor Q&A 

Science and research on dysautonomia is not a monolith, and that is never more evident than when you line up the top doctors on a stage and ask them questions about it.  

During the closing Doctor Q&A, patients get to ask questions, and doctors are exchanging ideas so quickly–sometimes they emphatically agree (they all agree, you should hydrate). And sometimes they disagree (how much does a gluten or dairy free diet actually help) and I love hearing why, and hearing their passion. 

They care. This matters to them. This matters to them as much as it matters to me. And that leads to the absolute best part of the conference. 

      8. Knowing we’re on the path to a cure 

I have been sick for at least 20 years, officially ⅔ of my life. I don’t really remember what it’s like to be healthy. I’ve had a lot of dark, hopeless moments about whether or not I’ll ever get better. 

But there was something so different about the tenor of how we look at the future this year. The conference was filled with new faces, in large part due the changing landscape of patients after COVID. But what stayed familiar is the eagerness of strangers to become quick friends, and exchange phone numbers, and add each other on Facebook or Instagram or whatever it is they use.  

Between the doctors, the researchers, the sponsors, the patients, the caregivers, the friends, even the service dogs!--We’re going to do this.  

We are going to find the cure. 

It will be slow. We have to work hard, we have to raise money, we have to participate in arduous research studies, we have to do un-fun things. We have to be patient, literally and figuratively.  

But we are going to do it. 

It’s going to be because of everyone in that room, in body, in spirit, we are going to do it.