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21 Feb 2004 PC Symposium 2004 I recently had the great opportunity of meeting the most amazing people. I just attended the first PC Symposium ever. I say “first” because there will be more. I wish everyone interested in PC could have been there to listen to incredible minds talk about us – or at least our genes and our skin. I confess, I was a bit nervous to meet doctors who I know think on a way higher level than me. (I’m more on a “What shall I fix for dinner tonight?” level.) But, I soon realized that these great people are just that – people - albeit very smart people, but very GOOD people. My only hope is that they had as good a time as I did.
"So...did they find a cure?..."
As soon as I saw my children after the big weekend, Nate asked, “So did they find a cure for Pachyonychia?” Sam was a little more realistic and asked if we made some steps towards finding the cure. I was happy to report to my boys – and to you – that the first steps have been made. I’m absolutely convinced we will one day reach our goal.. We are committed for the long haul. There's a 'summary' of what's planned on the Events page under 2004 Symposium.
My one worry, well, not worry, just a thought, is that I didn’t look “pained” enough to truly represent what PC patients actually go through. We from the PC Project kind of laughed about it afterwards that maybe I seemed too 'okay.' After the first night, my feet were hurting so badly, I upped some pain medication so I could enjoy the Symposium. You know if your feet are hurting to a certain point, you don’t care much about other things.
Needless to say, if any doctor ever reads this, you can rest assured I paid dearly come Sunday night and Monday. The pain medication doesn't stop the damage you do when you walk and when the medication wears off -- the damage remains. Don’t feel badly for me – I’m smiling while writing this. I think I’m basically a happy person, but that doesn’t mean I don’t wish to ski with you all someday! And that goes for all the other PC patients out there.
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