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Posted 5/5/2004 2:37 AM (GMT 0)

my name is jamiey, or ( mayme) to my niece RAVEN or(TOOCHIE)to me, has CF!  we recently had our walk in derby ct.  another women told me that it was bad for me to bring my niece to the walk??  no one has ever told us differant?  is it bad???     can cf kids play together???  where are all the answers???    my niece is almost 4!   in june!     besides my daughters  she is my world.  i am so, so scared of not knowing something or not knowing the truth.  if there are any 100% answers please let me know!  and my prayers are with each of you.            with heart of love

Posted 5/6/2004 11:22 AM (GMT 0)
Jamiey,
It is not bad for you to bring your neice to the CF walks, as long as she doesn't culture B. Cepacia. That if the bug that they ask you not to come if you have since they assume that people with CF WILL be at the walk. B. Cepacia is a very bad bacteria to get, so if that is an issue, then you wouldn't want to spread it. Most CF centers in the US would like you to keep kids with CF away from other CF kids, so they do not pass bugs back and forth. However if they culture the same things then they are pretty lenient about it.
The best bet is to keep the "3 ft. rule" just keep the kids with CF 3 feet awy from eachother. That should keep them from passing bacterias back and forth. And being out in the open is better than being in the same clinic together anyway!
Andrea
mom of Rachel 5 with CF and a boy on the way, no CF
Posted 1/17/2005 6:06 AM (GMT 0)
Medically speaking, CF patients can pass " bugs" back and forth so this is the reason for the 3- foot rule. There have been studies done as to 3rd party tranference and to my knowledge are in conclusive. In recent years the cf foundation and professionals do ask that patients themselves do not participate in things like this due to the high potential for cross contamination. It is very frustrating because my daughter(20 with CF) and I love to fund raise together and she loved going to camp. I can see the reason behind it but it does make it hard. We are organizing a family fundraiser selling the bears available on the CF foundation website. We have invited family and friends to help us sell bears at our local mall and church.
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