You're pretty close to me! My spouse has an apartment up in DC and I'm in Richmond. We should get together sometime!
I'm glad that you have a diagnosis. Was it done via genetics or via biopsy? There's a guy up at Yale looking for different ichthyosis mutations. If you're interested, I'd be glad to pass on his contact info to you.
Are you on Facebook? There is a pretty active forum over there...most of the users here tend to just chat there because it is more convenient. I'd love to hook you up!
Also, have you been in contact with FIRST?
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"