Support Groups

[anonymous]

Anyone out there active in an Adult CF Support Group? Do any of the US Centers have one? What about in Canada? How do you meet others with CF?
CF RN

 

[anonymous]

One reason I presume support groups are not formed often times is because of the risk of cross infection, which is a sad, but real concern.
I think an email support group would be good. Kind of impersonal, but better than nothing.

 

[anonymous]

CF Support groups were disbanned in our state many years ago r/t possible cross-infection.

 

[Mockingbird]

I go to a support group, but not CF. It's an invisible illness support group; most of the people there have lupus of fibro or Rheumatiod Arthritis (Did I spell that right? Oh, well, doesn't matter) Anyway, I've found they have a lot in common with me, as far as dealing with other people in their lives and having to deal with doctors and insurance.

Anyway, this group kind of started from another forum... one of the posters looked up all the people in Denver and suggested we start a support group, and enough people replied that it got going. It's kind of hard to meet, though, with everyone's hectic medical schedules and such, but when we do get a chance, I think it's worth it.

Jarod
22 w/cf

 

[Bubbalove]

I found it interesting that when I asked my boyfriend if he ever met someone with CF, his response was "Meeting someone with CF would feel like meeting an alien.." he knows he has it- but has never known anyone else to have it.. I think it is sad that everyone can't all come together- THANKS TO THE INTERNET!