The world has shrunk

I don't quite know how to explain what it means to meet people for the first time who know exactly what it's like to have this strange disease. I've known people without PC for years who still don't quite understand what I've got. Some people think it's worse than it is, while others can't quite comprehend why my feet hurt. Thus, to meet someone who knows exactly what I'm going through, well, it's hard to explain. We don't even have to say a word. We just seem to have an instant bond.

Last Thursday, I met for the first time a young woman with PC. She's a lovely person, a student here in Salt Lake City, who found PC Project through the website. We met in front of her apartment. I can honestly say I loved her and connected with her from that first moment. We hugged and the bond was there. You don't just do that with other people. You don't go meet someone at a swimming pool and hug because you both like to swim. You don't go meet the person who's helping you with your child's classroom Halloween party and hug because you both love children. But it somehow happens with PCers.

Meeting someone else with PC brings that incredible bond because I know THEY know what its like – and no one else really does, no matter how well you explain it or describe it. But my fellow PCers – they know.

That's what was so amazing about meeting PCers in both Kansas City and Dundee. I still feel so connected to them and I genuinely care about them, even after a relatively short meeting time. And it's interesting, once we meet, it's not enough to just know they understand. Finally, it's a chance to show my feet and nails to others and to compare and see similarities and differences. And even though there are some differences between us, that's okay too, because at least they still know, better than anyone else in the world, what it's like.

The first night I was in Dundee for the patient meeting, I met everyone and had this incredible experience of sharing and talking, just like in Kansas City. Afterwards, I went back to the hotel room I shared with Mary (you know, my mother-in-law, the Mary we all know and love) and we were chatting, tired, but on a happy high. And suddenly, I just felt overwhelmed with emotion. Maybe it was just jet lag, but it felt incredible to be with people who understood – not pitied, mind you, just understood. I also felt just as emotional about the fact that scientists and doctors who have dedicated their careers to skin diseases were there to host and be part of the patient meetings. To have scientists and doctors who were genuinely interested in understanding, well, that doesn't happen every day in a PCer's world and the only way they'll ever really know how much that meant to me is to have a heart transplant – from me!

All I can say is thank you to the many people – PCers, scientists, and others – who have sacrificed so much and have made these connections possible. You have touched my life, have given me great hope in the goodness of mankind, and have made my world that much happier. What marvelous people you are!