All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”

PatientsLikeMeinMotion's 2010 Transplant Games photoset
2010 Transplant Games photoset

As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s event. Our goal was to meet as many “Gamers” as possible to hear more about their journeys and to introduce our community where thousands of others are sharing their experiences. (Check out some of the more memorable moments in our photo gallery of the Games on our PatientsLikeMeInMotionTM Flickr page).

If you were a “pin trader” at the Games (a tradition akin to the “trading” that happens at Disney World), you probably walked around with our PatientsLikeMe-branded pin bag hanging from your lanyard or clipped to your belt loop. We gave out thousands of these small blue bags! Or maybe you stopped by the booth to grab a mousepad for a friend, take some leaflets for your clinic or steal a piece of chocolate for an afternoon sugar boost. Regardless of the reason, it was our pleasure to be there and support you in whatever way we could. Below is a video we showed at the booth to help people learn more about our transplants community. (Thanks to our colleagues Aaron and Adam for pulling it together!)

In the middle of day two at the booth, one gentleman stopped by and said to me – “I had my transplant years ago. I don’t really need social support at this point, so, tell me, why would I join a community like this?” And he waited patiently for the answer.

What I love about working for our company is that we don’t pretend to be something we’re not. If PatientsLikeMe is not for you, then it’s not for you. If our site were just a forum or simply a social network, then maybe he’d find little value in joining, and I told him that. But, he listened as I explained why we’re not just a forum. Some recipients still have questions about what they’re experiencing on a daily basis (e.g., “is it normal to still feel fatigue a few years after my transplant?”) and want to find information from patients’ real-world experiences. Other members create profiles to chart their own health over time and share that with their doctors; they may even choose not to interact with other patients. Still, we see many members – just like this gentleman – who had an organ transplant years before and are on our site to share their health journey so that others can learn from it. It’s this generosity in “giving back” that struck us from the first day we opened the doors to our online Transplant Community, and it’s what made the Transplant Games such an overwhelmingly inspirational experience. In the end, it was this generosity that made him say – “Well, good answer. I can jump on that wagon.” All aboard.

Thank you to everyone for doing what you do – online and off – to help raise awareness of organ transplantation and help others learn from your experiences.

PatientsLikeMe member lscanlon

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