CF camps

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anonymous

New member
Hey everyone

I am wondering how many of you would be willing to get together with other cystics. I went to a camp as a child, and it closed due to spreading bacteria, but i always felt that the psychological benefits far outweighed the physical risks.

anyways, i am just wondering if as adults, you would be willing to take that 'risk'?

thanks!

maggie
18 w/cf

42 days until africa!
 
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Seana30

New member
I know this can be a VERY touchy subject around here.

Everyone seems to have such different views on CF camps.

If you would have asked me a year ago if I would allow Courtney to go to one I would have said yes.

Now that we got a scare with her lungs I think reality sat in and I realize just how much of a chance you are taking by going to the camp. Now I would have to say no, I would not allow Courtney to go.

I believe the psychological benefits would be GREAT but I don't think I would be willing to chance it!!

Seana
 
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EnergyGal

New member
If I had a CF child I would not allow my child to go. They have wonderful websites for people with CF to share with others.
 
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anonymous

New member
I got lambasted on another site 'cuz I stated concerns about CF camps. I know there's someone who still operates one and they require cultures before people can attend, but it's not something I'd risk sending DS, too.

Liza
 
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anonymous

New member
wow, the websites dont even compare in a million years to the actual camp. I went to cf camp for about 9 years. I was lucky to miss the cepacia. I dont think id go back now with other cfs. But I believe camp made me alot of who I am today. I learned alot about the different degrees of cf, life experiences, and had the most fun I will ever have. No fun will ever compare in life to that of going to that cf camp. Its sad that this crap thing called cepacia killed it all, so many cfs couldve benefitted from those camps.

Chad
 
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Allie

New member
*dips her toe back onto the forum*

Ry went to camp Huff n' Puff, which is in the state and usually for kids with asthma, but they let kids with Cf come too. When Ry went there only 2 other kids with Cf, and they were different ages, so it wasn't a big deal.

When he was a counselor in later years, they just didn't put the few Cf kids in his cabin. I know he really liked the experience, maybe you could see if there's an asthma camp?
 
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anonymous

New member
chad

i totally agree. websites are not at all an adequate substitute compared to the camps.

everyone else

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

maggie
 
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coltsfan715

New member
I went to camp as a teen ... Church Camp not CF Camp and had a great time and wouldn't change having gone. I can honestly say I wouldn't go to a CF Camp now and I most likely wouldn't have gone then.
Camp in itself is a wonderful experience to interact with others in your age range from different areas. I think Camp in general can do alot for kids, but I personally wouldn't want to be hanging out with a bunch of other CFs with everyone each having their own little bacteria cocktail party in their lungs.
That is what is nice about this site, you can get to know people if you want, use it as simply a source of info and let people get to know you without the fear of passing germies to one another.

Lindsey
 
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anonymous

New member
Hi i live in Ireland and my friend is meeting up with 9 other cf's tomorrow for the annual cf conference don't see the harm really they've all given sputums tomake sure they have no harmful infections and i know that he benifits alot from it
 
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Brenco

New member
hey
the camps really works as much as the hospitals hate it. but its so benificial to me. its better than any of the drus im on, so if you do decide to organise something or hear of anything please email me. at bsinnott21@hotmail.com
but yeah im in full support of meeting up with other pwcf. From anywhere in de world.
Brendan (ireland)
 
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Brenco

New member
Can i please ask y you all wouldnt go on one of these camps, if you are afradi of picking up infections then there are ways and means for infection control b4 any1 sets foot on the bus, if you are intrested in hearing more email me bsinnott21@hotmail.com

thanks
Brendan (Ireland)
 
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JazzysMom

New member
Never went to a CF camp. Had no interest & still wouldnt. I did go to girlscout camp & didnt really like it, but thats me.
 
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anonymous

New member
My cf doc as a kid always spoke highly of the cf camps. I never went, I'm 26, but now knowing about Cepacia, it sounds like it could have been dangerous. I was very, very healthy as a child and to think I could have picked something up at camp is a little scary. I guess I'm glad I didn't go.
 
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CFRI

New member
Hi Maggie et al:<br>
<br>
Take a look at the retreat that CFRI is preparing for August 6-11,
2006 at the CFRI blog site.<br>
<br>
Regards,<br>
David<br>
 
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HairGirl

New member
I really liked CF camp but I have Cepacia and know they wouldn't
let me go and I could have gotten it from there! But I'm glad this
website is here, it's hard not to be able to socialize with other
people with CF, I think it would help alot.
 
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ChelsAnn

New member
Totally have been thinking about bringing this topic up. About 3-4 years ago my dad got the manager position at the camprgrounds that Camp Funshine goes to. Needless to say, the camp is considered an outlaw camp and they basically freaked when they found out that the manger's daughter has CF and cepacia. I usually leave and go to my grandparents' house or stay secluded in my house when the camp comes. Personally, I don't agree with the camp although I know it must be great spending time with other CFers. Although they culture all the kids that come to the camp, I have had experiences with my own bacteria where it won't show up in my cultures for a while and then all of a sudden show up again. Doesn't mean it went away... just means that the bacteria was dormant for a while. Who's to say that there might be a kid at the camp who has bacteria in their lungs that is dormant and that they possibly don't even know about yet?
 
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anonymous

New member
Allie - I will look into asthma camps, i'm glad ry enjoyed it.

Brendan - I will email you\

David - I will actually be in Africa then, but I will definitly keep my schedule open for next year, thank you so much for telling me about that!

Hairgirl - I don't have cepacia, but still can't find a camp to go to, it would help so much to be able to go.

Everyone else - Thanks for the imput

Maggie
 
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thelizardqueen

New member
I attended the CF camps a couple of times when I was younger, and yes did enjoy interacting with other CFers. That being said, I would never go back due to the cross contamination that closed them down. I find that I interact more then enough with Cfer's on this site. With this site you can interact with EVERYONE, not just the small group of friends you form at the camp, because lets face it, not everyone gets along in person. We've all had our type of "cliques" growing up.
 
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anonymous

New member
I would love to be able to do this, since I know from when I was a child that it was an invaluable experience. However, knowing now what I do, I would not ever go again. Just too much risk. You can culture different things depending upon the week you are tested, and some things don't show up in a culture until later. I wish it wasn't like this, but my personal opinion is that I wouldn't go.

I also am not a big fan of anything with the word "camp" in it anyway. I'm more of a Hotel-type person. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sonia
 
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