JR and I weren't able to make the 2004 conference but we did attend the one in 2002. Back then we were very dissapointed that there wasn't any sort of spouse/significant other group and made sure we suggested it for the next conference. We are hoping to attend the 2006 conference and really feel that a spouse group would be beneficial. Some of the things my husband has mentioned that he'd like to have discussed is:
-supporting your spouse with ichthyosis with social issues. For example, he'd like to know what others do when their significant other gets negative attention in public due to their skin
-coping with the medical concerns, ie how do you take care of yourself when your spouse/significant other is sick or in pain and still be supportive of your partner?
-how to deal with questions from others such as "are you two going to have kids?" etc.
there are a bunch of other items, but those are the ones I remember off the top of my head. I'll ask JR again and add more to this at a later date.
I am female, and was born in 1972 with Lamellar Ichthyosis.