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#19956 - 07/22/04 11:43 PM having a spouse group at the next comferance
bda guy Offline

Registered: 07/22/04
Posts: 13
Loc: bermuda
Like to get feed back on the idea of a spouse group at the next comferance.

#19957 - 07/23/04 06:56 AM Re: having a spouse group at the next comferance
Les Avakian Offline


Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello BDA Guy
I think it is already in the works on having a spouses group for the next conference. A few of the spouses entered our mens discussion group on Saturday morning at the conference, and it went very well. They gave their perspective on living with someone with ichthyosis and freely exchanged experiences and ideas with the group.I think it is a great idea to have a spouses discussion group session.If you would like, contact Jean or Maureen at or (215)631-1411.Take care and by for now.
Les Avakian
Les Avakian

#19958 - 07/23/04 02:21 PM Re: having a spouse group at the next comferance

I'm not sure that a spouses group would be all that beneficial from a mans point of view. First of all it isolates anyone who isn't married making them feel left out. The mens and womens discussions already achieve something that a spouses group may not. That is the ability to speak more freely in front of just the "guys" or "gals". There are things we will talk about only to our spouses, or we may be more comfortable talking about things with members of the same sex. Put us all in one room and we may have 90% of the men sitting quietly hesitating to participate. This may also cause a scheduling conflict, where are all the single people going to go during this discussion? I suppose they could hold a "singles" group at the same time. If such a meeting is created it would have to take place at a time when people wouldn't miss out on any other informative meetings and to do it all in two days is hard enough already. This is just my take on it, I'd like to hear everyone elses.

#19959 - 09/26/04 06:24 PM Re: having a spouse group at the next comferance
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
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.


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