My Time at the 2023 International Patient Conference
As I sat in the car en route to the Myositis Association International Patient Conference, I felt both excitement and trepidation. I had attended many conferences when I was in the working world and had learned to “work the room.” I’d come away with the best information available. This year was different. My diagnosis with IBM was pretty new, and I would be face-to-face with folks in more advanced stages than myself. Nevertheless, I was determined to make the most of the experience, both in terms of networking opportunities and the wealth of information that awaited me.
Before registration, I put on a T-shirt I’d made that said, “I have IBM, it does not have me.” The moment I stepped into the registration area, the energy was palpable. Many people nodded or said, “Great shirt.” People from all corners of the world had gathered here, each with their own story to tell, their own expertise to share, and a deep pool of ideas and knowledge. I couldn't help but feel a sense of belonging amidst this diverse group of attendees, even though I didn't know a single soul. While not yet comfortable, I was getting excited about how this would go.
I made a second T-shirt to give to Myositis Joe. He is very inspirational and posts every single day on the Inclusion Body Myositis Support and Understanding Facebook page. I waited until I was sure he was in attendance, then made it a point to meet him and give him his gift. If it weren’t for him, I might never have started this blog. To my amazement and joy, he wore the shirt several times over the weekend.
One of the greatest challenges I faced at the Conference was seeing so many of my fellow attendees in the later stages of the disease. It was a stark reminder of the path my own journey might take. However, I chose to see it as an opportunity rather than a setback. These brave individuals were living testaments to the resilience of the human spirit. Their stories, their courage, and their determination inspired me to keep pushing forward, no matter what lay ahead. Many of them were leaders of discussions in sessions or more than willing to share their experiences during “getting to know you” sessions. I took a lot of notes.
To my surprise, many people had been diagnosed years ago and were still mobile and active. This helped dispel my assumption that I would be in a wheelchair in a few years. Now I am more determined than ever to keep from having one at all, or at least having a racing one.
The informational speeches were the highlight of the conference. Renowned experts from around the globe took the stage to share their insights and findings. Each presentation was an hour of information, a chance to learn and grow. I feverishly took notes, absorbing every word, every statistic, and every breakthrough. I was excited to learn about cutting-edge research and innovation. During so much of my IBM journey so far, I have been searching for any information I could use. This conference offered me almost more than I could absorb. I will continue to absorb parts of it for weeks and maybe months.
One speaker spoke frankly about IBM, what we might do and what would be a waste of time. He believes in increasing exercise as much as possible and keeping a positive attitude. There were several studies referenced about what could become known in the next few years. The staff of The Myositis Association was a great resource as well. I joined the organization and intend to get more involved. I learned about a new Facebook support group, Women with Inclusion Body Myositis, and that watching for affinity group events on the Myositis Association Facebook page is a great way to stay in contact.
Truly, though, the real magic of the conference lay in the networking opportunities it provided. Although I was initially hesitant to approach strangers, I soon realized that everyone at the Conference was passionate about the same cause: finding answers, supporting one another, and making a difference. It didn't take long for me to strike up conversations with fellow attendees, and I was pleasantly surprised by the warmth and openness of the people I met. I even met two people from my area. One session was called “hacks and hints that have worked for me,” and the audience participated as much as the presenter. I saw many things I will need to remember as this disease progresses. I think I will write a blog post about that as well soon.
The vendor fair was a great help as well. There was an amazing exoskeleton glove made by Bioservo Technologies. It is not yet approved by the FDA, so it is only sold outside the U.S. I got the opportunity to try it. Amazing is all I can say: I want one! Of course, right now, it costs $7,000. If it gets FDA approval for an IBM diagnosis, it could be covered by insurance. I will look forward to that day. I have high hopes for other exoskeletons that can give us back our lifestyles soon.
As the conference came to an end, I left with a heart full of gratitude and a mind buzzing with newfound knowledge. Yes, I had faced the daunting prospect of meeting individuals in the later stages of my disease, but instead of being disheartened, I had been uplifted and inspired. The conference showed me the power of connection and the importance of staying informed.
So, if you ever find yourself in a similar situation, facing the unknown at a conference filled with strangers, remember that every encounter, every conversation, and every presentation has the potential to change your perspective and your life. Embrace the opportunity, seize the moment, and let it propel you forward on your journey, no matter where it may lead.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
