Patient Support Meeting - San Francisco

Last week my son Nate and I attended the PC Patient Support Meeting in San Francisco. In all, 15 people with PC attended. As PC Project has grown, so have the numbers at the patient support meetings. Of course, that is great. I did enjoy, though, once again attending a smaller meeting. I talked with every single person who attended. I liked that. I love being with my fellow PC people.

The meeting was a lot like other patient support meetings in that we got a basic PC background. When I was first learning about PC, I found myself eager to understand why I have PC. I’ve found knowing that has even empowered my boys who have PC. They don’t feel so weird when they just know it’s a single mistake in the DNA strand and exactly what that means. But because science is not my background, I always like the refresher course I get at these meetings.

One of my favorite presentations at every patient meeting is the one about current PC research. I get excited every time and feel so grateful for what is being accomplished.

Another presentation I thoroughly enjoyed was one on pain. I loved having a dermatologist talk with us about pain. I love knowing there are doctors that truly understand and who want to learn more. Throughout the pain presentation, this particular doctor had us hold up colored cards – red if something didn’t apply to us, green if it did. It was neat to see similarities amongst us, and it was also telling that we can be so different.

Okay, here’s my confession: I sometimes get uncomfortable at patient support meetings because I walk a lot with crutches while many other PCers do not. I feel insecure and feel like I’m not as “tough”. The best thing about presentations like this one is it reminded me (once again) I cannot compare my pain to even the person sitting next to me. We who have PC understand one another because we obviously have common issues, but we are different. At the meeting I met three of five siblings who all have PC. They told me how different they were, even in the same family and with the same genetic mutation. Yes, I know this is true, but I still have issues with it sometimes when I meet others with PC who seem to do more physically than I do.

We also had a few new features that were fun – all provided by patients. One patient presented information on PC genetics. Another provided an exercise video just for PCers. I was inspired to get moving again. Another PCer shared his experiences with pain clinics. Another PC was a model while his wife, a massage therapist, demonstrated techniques and talked about the about the benefits of massage. At first it was hard to imagine anyone touching my feet. But I was one of the lucky ones who received a hand and a foot massage. Not only was it pain-free, it was completely relaxing, soothing and I crave another foot massages just writing about it. Who’d have ever thought I’d say that? And I appreciate the massage therapist because at first I was so self-conscious, worried if my feet smelled funny (which they often do) and especially worried about how they looked. She kindly reassured me and gave an awesome massage.

Another PCer led the patient discussion. He did a super job. I liked discussing in a smaller group. Everyone got the chance to share and it was easier for me to open up with less numbers. You can read all the details of the patient meeting on the main page of the website. Just know how thankful I am to these talented PCers who spent so much time preparing and sharing with us. I’m also thankful to everyone who participated. You are wonderful people and I feel like I’ve made some new friends!

As PC Project membership continues to grow, we’ll always be re-evaluating everything we do, including these patient support meetings. But I recognize these meetings are a gift. They are a bonus. The goal of PC Project is to first and foremost find the cure and effective treatments for PC. So I appreciate all the more the extra time and resources it takes for PC Project to provide these meetings. Thank you for another rewarding experience.