I have a confession to make. I’ve been diagnosed with vascular Ehlers-Danlos Syndrome for 6 years now, but the vEDS Collaborative Meeting in July was the first time I met another vEDS patient face-to-face. I could make a list of reasons why it took so long, but ultimately the biggest reason was fear.
How would I react to meeting other patients and hearing their stories face-to-face?
My concern was that these conversations would strike too close to home and I’d come out of the interactions feeling worse about my condition. So I assumed I could deal with the condition better on my own and for years I found reasons not to meet other patients like me.
To my surprise and delight, when I finally met my first vEDS patients in person, my assumption couldn’t have been further from the truth. The time spent with people like me was an uplifting, inspiring experience that I will never forget.
Strangers with an Immediate Bond
I’ve read in the past about strangers that meet and immediately share a bond, like immigrants from the same home country or veterans of the same war. I’ve certainly never experienced it in my life and I underestimated how real and powerful the bond can be.
Friends and family have been a great source of strength for many of us, but other patients understand being a vascular EDS patient in a way that no one else can. I felt that immediate connection. I didn’t have to explain the way it feels to have vEDS – the fears, the frustrations – it was understood without saying a word.
It felt like a weight was lifted off my shoulders and I could just be me. In every way, without needing to hide anything.
A Positive, Upbeat Group
The people themselves were maybe the most impressive source of inspiration. These patients were HAPPY. Despite the circumstance, the vEDS community is not a pessimistic group. People are active, busy, leading normal lives. The group I met laughed and joked. Talked about their ambitions within the vEDS community and within their personal lives. This positivity is contagious and I couldn’t help but feel encouraged about my situation and about being part of this amazing network of vEDS patients.
I think a big reason for this positivity is the amount of energy that is being dedicated to vascular EDS. Any researcher or doctor knowledgeable in vEDS says this is the most active the vascular EDS community has ever been. Dedicated patient advocates across the country are working to boost awareness, help people get tested, educate patients on the most up-to-date treatment plans, and foster the next wave of research to improve outcomes.
Lessons I Learned
I learned several valuable lessons from my first interaction with other patients:
You have to be “ready”. It took me some time to reach that point but I’m incredibly glad I did. I will never forget the first vEDS Collaborative meeting for this reason, and cannot wait for the next opportunity to meet more of my fellow "vEDSers".
So many patients are doing so well. These patients were happy and, all things considered, these patients were healthy. We all had our “war stories” about the arterial events that led us to our diagnosis and led us to that very room where we were meeting. But everyone is optimistic, upbeat, living their life to the fullest.
The happiest patients feel in control. We might have a long way to go in vascular EDS but we need to do away with the notion that vEDS is a death sentence and there is nothing you can do, so why even try. There are things we can do, and there are things that we are doing. We need to stay healthy, do our part to take care of ourselves and keep pushing forward towards better treatments and better outcomes!
Support makes a huge difference. Connecting with other vEDS patients, whether in person or online, can be a great source of strength. If you haven’t already connected with support groups, consider joining when you are ready. For instance, EDS Today's Facebook Group is a wonderfully supportive patient community and a great place to connect with other patients like us. And be sure to subscribe to FIGHT vEDS to get updates on other opportunities to connect with the vEDS community.