Support Group

[sugashanec]

hey guys. my name's shane, i'm a 19 year old male living with CF in new york. i was wodnering if any of you are involved in a CF support group in your town? i would like to start one up in my region, and I just want to get some insight on what some of you, if any of you, do in your support group - events, discussions, speakers - those kinda things. hopefully some of you are involved. if not, i'll come back with some tips on how to start one once the one in my town is underway, and you guys can head up your own support group projects. i'm determined to make it happen in my area! thanks for your help.

-shane

ps - feel free to hit me up on AIM if you want to talk, my SN is: suga shane c

<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

A lot of the actual "live" support groups have been cancelled because of the cross-contamination issue. I would go, I think, because I grew up with "real life" CFer friends, and am starting to make new ones now (yaaayyy Coll). The benefits, in my opinion, outweigh the negatives. I might be more careful (like wearing a mask, maybe) if someone had cepacia, but I still wouldn't avoid them like the plague.

This messageboard has kind of become my support group. That and the CF community on LJ. Plus I talk to about 20 people with CF on AIM.

I know the CFF does not condone live support groups anymore. You might have a hard time starting one, but it's not necessarily out of the question. Almost all CF doctors that I know of try to get you to avoid meeting CFers (talk to them on AIM, get a webcam, etc). Because of this, new parents and new patients are hearing only that: avoid CFers. Like I said, I grew up around CFers because it was before they knew about the bacteria passing. I think it's partly because of that that I'm still willing to see CFers. But I'm pretty sure people with CF that are willing to spend time with other CFers, like myself, are in the minority now.

Good luck, though. <img src="i/expressions/rose.gif" border="0">

 

[sugashanec]

thanks a lot emily. you mentioned "the community on LJ" - i'm curious to know about that. if you can give me a little info about that, that would be great. i'd like to meet more people with CF as well, whether live or through forums or AIM, so i'm doing what i can to reach out to internet communities like these. if you can give me some info on LJ (what LJ stands for, for starters), that would be great! thanks for your help emily!

-shane

 

[Emily65Roses]

Well, for starters, you can always IM me. Emily65Roses.
LJ= Livejournal.com
It's an online journal, a blog. Everyone who uses the communities has their own. Mine is: <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/users/emily65roses/
">http://www.livejournal.com/users/emily65roses/
</a>You update it when you please, with whatever you want to say. A community is a little different. A bunch of people who have LJs and a common interest can start a community. There are two for CF, one called Cystic Fibrosis, one called 65 Roses. The Cystic Fibrosis one seems to be busier, and updated more often. What you do in that case, is go to update like you would in your own LJ, but grab the pull-down bar, and update onto the CF community instead. Then your post goes onto the community. Anyone who's a part of a community can update onto it, whereas only you can update on your own LJ. Then there are chances to read and write comments on the posts, ask questions, lend support, whatever else. Here are the two links:
The 65 Roses community: <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/community/65_roses/
">http://www.livejournal.com/community/65_roses/
</a>The Cystic Fibrosis community: <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/community/cystic_fibrosis/
">http://www.livejournal.com/community/cystic_fibrosis/
</a>Go check those out, skim through them and you'll see what I mean fairly quickly. It's a lovely little support group, somewhere to go with questions, worries, or just to generally complain. A girl on the CF LJ community just got her double-lung tx a week ago, so there's been a lot about that recently.

 

[anonymous]

Omg Emily, I went to the link about the lung tx girl and photos from ur site, its amazing. I think its great that she takes them all. She looks like shes doin great. Please continue to post more links to her photos as she puts them up cas Im really interesting to look. And since Im not great with technology, its easier just to access them from ur links!

Shamrock, x