vhl alliance


by Andrea B.

I wasn’t quite sure what to think when I first learned that the VHL Alliance would be hosting a retreat for young adults, but with the promise of stargazing, I figured it couldn’t be too bad. Six VHLers made it down for the weekend. While there were some familiar faces from VHLA’s 2016 International Medical Symposium and last fall’s Annual Family Weekend, there were also new people. It sort of felt like a blind date. To be honest, I was apprehensive that my “dates” would only want to focus on VHL. While it was the one thing we all had in common, I’ve never been super keen on sharing my VHL journey with others. That is because they have a tough time really understanding what I’m going through.

I suppose I shouldn’t have been too surprised that it felt comfortable sharing my story with these people. They didn’t just listen, they really understood what it is like to live with VHL. As I solved an Escape Room game, played VHL Jeopardy, shared some home-grilled surf and turf, hiked in a state park, listened to live music at a famous local hangout, and even had a little karaoke fun during the car rides, I came to realize that these folks seemed like they were not just surviving, they were thriving with VHL.

That’s not to say VHL had spared any of us. In fact, as I learned through our conversations with a social worker from Vanderbilt (a VHL Clinical Care Center), between the 6 of us, we have had operations on most of the 10 organs where VHL can rear its ugly head. And we have scars to prove it! In addition, some participants also have had to serve as caregivers or even had to bury parents whose lives were cut too short by VHL.

To thrive with VHL requires a tenacious spirit to face challenges over and over again. It requires gratitude to be rooted in our hearts for the many members of our care team and extended support system who work tirelessly to keep us as healthy as possible. It requires humility to reach out when we need help quelling “scan-xiety”, performing easy tasks while recovering from surgery, or sticking to healthy lifestyle habits. It also requires hope for a cure and commitment to contribute to research efforts that are bringing about a better understanding of and treatments for VHL Thank you to the VHL Alliance for helping us thrive with VHL!

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