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Cystic Fibrosis Forum (EXP)

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New Forums. . .

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anonymous

New member
It was great to see the addition of the new forums. Even without getting old posts into the right place this will really help people to find info they are looking for.

But, how about another for spouses/significant others of those with CF? The families section seems to really address parents and relatives of kids with CF, but there's not really a spot for the spouses. I was looking at the FAQ for the www.cysticfibrosis.com site and it included a question about spouses. Why not create a designated spot for them?

My husband said he thinks this may be because it's sort of a new idea to think about CFers with spouses, but I think it's obvious from the posts on this site and the fact that it's included in the FAQ that there is a need.

Why not?
 
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anonymous

New member
I've been looking for somewhere that has a place for partners of CF's for ages, I think it's an excellent idea, I enjoy this site and would be keen to participate.

Pete (think I forgot to sign in)
 
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chipper28

New member
This definitely sounds like something there is a need for.
 I'm new to this whole game, but based on the most recent
census I read, it seems like 20% of cfers have a spouse not even
counting those with significant others.... The era of parents being
the main/only system for a cfer seems to be in the past.<br>
<br>
I've put together from a few posts that someone named Bill is the
power to talk to in order to get things to happen, but does anyone
know how this is done?
 
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anonymous

New member
Just wanted to put this back on the front page just incase admin forgot <img src="i/expressions/face-icon-small-wink.gif" border="0">

Pete
 
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anonymous

New member
Any other forum ideas? It's always a careful balance between too many and too few... But the subforums idea seems to work pretty well.

I'd say significant others. At least in the US, this is generally accepted to mean someone who is romantically involved with a person, which is the group I think this forum is trying to address. Not parents of cfers, not family of cfers, not cfers themselves, but those who are chosing to be dating/seeing/married to a cfer.

Hopefully someone outside the US can chime in about whether this is a US-centric viewpoint or if this label would work for English speakers in other countries.
 
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Scarlett81

New member
Definately a good idea. The thought of coming to a website to talk to others about your spouses disease can be intimidating at first, so if people came here and saw that theyd probably be more comfortable with talking here.

I was just talking to my friend, whos hubby got dx with MS, and she said she wanted to join an online support group, but thought she'd be the only non ms wife there, and going to a chat for support was a betrayal. I told her theres lots of non sick spouses on the cf chat-its neccesary to talk in that position I'm sure!
 
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anonymous

New member
HUGE need... The cff 2004 patient registry showed that 41.8% of cfers were over 18 with at least 36% married. Obviously with so many cfers having their primary support system being a spouse instead of their parents this forum is totally needed.

I'm in the US, so no thoughts on the global meaning of significant others, but I think it's a good name.
 
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Pete

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I'd say significant others. At least in the US, this is generally accepted to mean someone who is romantically involved with a person, which is the group I think this forum is trying to address. Not parents of cfers, not family of cfers, not cfers themselves, but those who are chosing to be dating/seeing/married to a cfer.



Hopefully someone outside the US can chime in about whether this is a US-centric viewpoint or if this label would work for English speakers in other countries.</end quote></div>

Don't know if it needs to be SPECIFICALLY for partners/significant others, input, conversation or whatever from anyone related to this disease would be greatly appreciated I'm sure...by me anyway, but a forum aimed with CF supports in mind would be great.

Have just been talking about this with my partners mother and the thing about this disease is that there's no REAL support for CF's relations and partners (in Australia anyway). For people suffering from diseases and addictions or whatever really, there's plenty of help, counselling, support etc etc but for the people in the background there seems to be a lack of people to talk to about what you need to.

Having the internet and a forum like this gives ANYONE who has ANYTHING to do with this disease the opportunity like no other to get help, support, questions answered or just venting.

There's a million things to laugh or cry about with CF, we ALL need it.
 
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