Support Group

[sugashanec]

Hello everyone. My name's Shane, I'm a 19 year old male living with CF in New York. I was wondering if any of you or members of your family 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 and/or your family do in your support groups - events, discussions, speakers - those kind of 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

 

[Purplelungs]

Support groups arent allowed any more....at least for the cfers themselves. To risky for cross contamination. In fact a internet friend of mine from New York says that her insurance would drop her cf son if he was in contact with another cfer. Especially if he picked up a bug and had contact with another cfer her insurance would say he got it from the other cfer whether he had proof or not. I am sure they could put up a good fight but its to ricky for her son to be dropped...because inbetween being dropped and fighting they would hve no insurance....Anyway i was chasing a rabbit. I know there are certain events where cfers get together but only ones that dont have certain bacteria. It might be pretty hard to set up a support group just because of fear from cross contamination.

 

[CrystalDaniels]

Cross Contamtion from Cystic Fibrosis? bateria? its genetic, not air born, or can spread like aids... doesnt make much sense to me... ?

Please Explain.

 

[Emily65Roses]

You got it, Crystal. <img src="i/expressions/face-icon-small-smile.gif" border="0">
CF itself doesn't spread, no. Cross contamination is in reference to any one of a number of bacteria CFers grow in their lungs: staph, MRSA, pseudomonas, cepacia, and a whole lot of others. As CFers, we are very susceptible to other CFers' lung bacteria. So that's what they're trying to avoid spreading by keeping CFers apart.

 

[Purplelungs]

Sorry i wasnt clear. Thanks Emily for clearing it up. Yes I meant CFers cant be in support groups together because they can pass their bacteria back and forth to each others, not spread cf.

 

[sugashanec]

thanks for your help everyone. it's unfortunate that this is the case, but inevitable nonetheless, and something we all have to come to accept i suppose. this community, however, is a great source of networking with other CFers, and i'm glad to have come upon it. i can tell that i'll be a regular around these parts. <img src="i/expressions/face-icon-small-smile.gif" border="0">

-shane