Deb, isn't it nice to know you're not alone? I am very greatful for this bulletin board too. I have never gone to one of the FIRST conferences, but my husband and sister and I are thinking of going to the next one. You might want to check out the information on it by following Laura's links to the FIRST web site.
Keep us posted on what happens, and if you have any questions about anything your doctor wants you to try, I am sure every single person who visits here would be more than happy to share experiences and give you a few tips.
I am female, and was born in 1972 with Lamellar Ichthyosis.