I wanted to let people know that the wiki I created to store information about our condition will no longer be hosted freely (unless I can prove it is useful in higher education) and will expire 11/14/14. I will make my final update there about the status of my condition. Please take a look at its contents, or download the PDF I posted in the Gallery, and feel free to copy the information and add to any site you are hosting. If there are any researchers out there please let me know if this info would be useful and maybe we can convince wikispaces to continue hosting for free.
My condition has slid back this summer to frequent peeling, doing moisture but not following any real diet, but I have been having the time of my life, am seeing someone new, and after nearly 8 years I simply cannot let this slow me down anymore no matter how bad it is -- life is too short.