Support Groups

AimeeSue82 · Sep 2, 2009

I've got an idea rattling around in my head that I may want to try to start a support group in my local area. It would basically be like this board, a resource for people, only live action. I just feel like it helps to know you're not a lone if you can see each other face to face and you can get to know the people going through this with you. And if you all live in the same community, you can support each other in other ways maybe that this board may not be able to offer. I just wanted to get your thoughts. I know the most obvious risk is having multiple people with CF in the same area together, but if we got masks like they use a clinic and tried to refrain from coughing directly on each other, do you think it would make a difference? We would have to meet in public places as opposed to someone's house to prevent bacteria contamination, I assume. But so far those are the only things I've thought of. Any other roadblocks? If there was a group in your local area, would you attend meetings? Thanks for your feedback!

Aimee

AimeeSue82 · Sep 2, 2009

I've got an idea rattling around in my head that I may want to try to start a support group in my local area. It would basically be like this board, a resource for people, only live action. I just feel like it helps to know you're not a lone if you can see each other face to face and you can get to know the people going through this with you. And if you all live in the same community, you can support each other in other ways maybe that this board may not be able to offer. I just wanted to get your thoughts. I know the most obvious risk is having multiple people with CF in the same area together, but if we got masks like they use a clinic and tried to refrain from coughing directly on each other, do you think it would make a difference? We would have to meet in public places as opposed to someone's house to prevent bacteria contamination, I assume. But so far those are the only things I've thought of. Any other roadblocks? If there was a group in your local area, would you attend meetings? Thanks for your feedback!

Aimee

AimeeSue82 · Sep 2, 2009

I've got an idea rattling around in my head that I may want to try to start a support group in my local area. It would basically be like this board, a resource for people, only live action. I just feel like it helps to know you're not a lone if you can see each other face to face and you can get to know the people going through this with you. And if you all live in the same community, you can support each other in other ways maybe that this board may not be able to offer. I just wanted to get your thoughts. I know the most obvious risk is having multiple people with CF in the same area together, but if we got masks like they use a clinic and tried to refrain from coughing directly on each other, do you think it would make a difference? We would have to meet in public places as opposed to someone's house to prevent bacteria contamination, I assume. But so far those are the only things I've thought of. Any other roadblocks? If there was a group in your local area, would you attend meetings? Thanks for your feedback!

Aimee

AimeeSue82 · Sep 2, 2009

I've got an idea rattling around in my head that I may want to try to start a support group in my local area. It would basically be like this board, a resource for people, only live action. I just feel like it helps to know you're not a lone if you can see each other face to face and you can get to know the people going through this with you. And if you all live in the same community, you can support each other in other ways maybe that this board may not be able to offer. I just wanted to get your thoughts. I know the most obvious risk is having multiple people with CF in the same area together, but if we got masks like they use a clinic and tried to refrain from coughing directly on each other, do you think it would make a difference? We would have to meet in public places as opposed to someone's house to prevent bacteria contamination, I assume. But so far those are the only things I've thought of. Any other roadblocks? If there was a group in your local area, would you attend meetings? Thanks for your feedback!

Aimee

AimeeSue82 · Sep 2, 2009

I've got an idea rattling around in my head that I may want to try to start a support group in my local area. It would basically be like this board, a resource for people, only live action. I just feel like it helps to know you're not a lone if you can see each other face to face and you can get to know the people going through this with you. And if you all live in the same community, you can support each other in other ways maybe that this board may not be able to offer. I just wanted to get your thoughts. I know the most obvious risk is having multiple people with CF in the same area together, but if we got masks like they use a clinic and tried to refrain from coughing directly on each other, do you think it would make a difference? We would have to meet in public places as opposed to someone's house to prevent bacteria contamination, I assume. But so far those are the only things I've thought of. Any other roadblocks? If there was a group in your local area, would you attend meetings? Thanks for your feedback!
 
 Aimee

Transplantmommy · Sep 2, 2009

Well, as some people know, I have met up with a lot of people who have CF, even held one of the get togethers here at my house in June. I think that it is very helpful for all of us to actually get together and know that they are all going through the same things that I have been through. I know that you can talk about it on forums, but it's so much different doing it in person...much more personal.

My local CFF chapter has meetings like two or three tims a year and anyone who has CF can go as long as they don't have cepacia or MRSA.

I would definitely go to a support group if my area had one. So, I think that if you can get this up and running and get people to go to it, more power to ya!

Transplantmommy · Sep 2, 2009

Well, as some people know, I have met up with a lot of people who have CF, even held one of the get togethers here at my house in June. I think that it is very helpful for all of us to actually get together and know that they are all going through the same things that I have been through. I know that you can talk about it on forums, but it's so much different doing it in person...much more personal.

My local CFF chapter has meetings like two or three tims a year and anyone who has CF can go as long as they don't have cepacia or MRSA.

I would definitely go to a support group if my area had one. So, I think that if you can get this up and running and get people to go to it, more power to ya!

Transplantmommy · Sep 2, 2009

Well, as some people know, I have met up with a lot of people who have CF, even held one of the get togethers here at my house in June. I think that it is very helpful for all of us to actually get together and know that they are all going through the same things that I have been through. I know that you can talk about it on forums, but it's so much different doing it in person...much more personal.

My local CFF chapter has meetings like two or three tims a year and anyone who has CF can go as long as they don't have cepacia or MRSA.

I would definitely go to a support group if my area had one. So, I think that if you can get this up and running and get people to go to it, more power to ya!

Transplantmommy · Sep 2, 2009

Well, as some people know, I have met up with a lot of people who have CF, even held one of the get togethers here at my house in June. I think that it is very helpful for all of us to actually get together and know that they are all going through the same things that I have been through. I know that you can talk about it on forums, but it's so much different doing it in person...much more personal.

My local CFF chapter has meetings like two or three tims a year and anyone who has CF can go as long as they don't have cepacia or MRSA.

I would definitely go to a support group if my area had one. So, I think that if you can get this up and running and get people to go to it, more power to ya!

Transplantmommy · Sep 2, 2009

Well, as some people know, I have met up with a lot of people who have CF, even held one of the get togethers here at my house in June. I think that it is very helpful for all of us to actually get together and know that they are all going through the same things that I have been through. I know that you can talk about it on forums, but it's so much different doing it in person...much more personal.
 
 My local CFF chapter has meetings like two or three tims a year and anyone who has CF can go as long as they don't have cepacia or MRSA.
 
 I would definitely go to a support group if my area had one. So, I think that if you can get this up and running and get people to go to it, more power to ya!

saveferris2009 · Sep 2, 2009

I wouldn't go. NO way, no how.

Even if CFer's don't have MRSA or Cepacia, they can still give each other various PA strains - some can even be multi-drug resistant.

I work for HOURS a day trying to keep my lungs healthy with my vest, nebs, exercise, proper nutrion and adequate sleep.

To have that negatively impacted by picking up another bacteria from other CFer's - I don't see the risk benefit ratio being positive.

I go to clinic enough as it is - I don't need more exposure to CF germs. Especially when there's a great alernative to meeting in person called the internet.

Doing anything to compromise my lung health is otu of the question for me.

saveferris2009 · Sep 2, 2009

I wouldn't go. NO way, no how.

Even if CFer's don't have MRSA or Cepacia, they can still give each other various PA strains - some can even be multi-drug resistant.

I work for HOURS a day trying to keep my lungs healthy with my vest, nebs, exercise, proper nutrion and adequate sleep.

To have that negatively impacted by picking up another bacteria from other CFer's - I don't see the risk benefit ratio being positive.

I go to clinic enough as it is - I don't need more exposure to CF germs. Especially when there's a great alernative to meeting in person called the internet.

Doing anything to compromise my lung health is otu of the question for me.

saveferris2009 · Sep 2, 2009

I wouldn't go. NO way, no how.

Even if CFer's don't have MRSA or Cepacia, they can still give each other various PA strains - some can even be multi-drug resistant.

I work for HOURS a day trying to keep my lungs healthy with my vest, nebs, exercise, proper nutrion and adequate sleep.

To have that negatively impacted by picking up another bacteria from other CFer's - I don't see the risk benefit ratio being positive.

I go to clinic enough as it is - I don't need more exposure to CF germs. Especially when there's a great alernative to meeting in person called the internet.

Doing anything to compromise my lung health is otu of the question for me.

saveferris2009 · Sep 2, 2009

I wouldn't go. NO way, no how.

Even if CFer's don't have MRSA or Cepacia, they can still give each other various PA strains - some can even be multi-drug resistant.

I work for HOURS a day trying to keep my lungs healthy with my vest, nebs, exercise, proper nutrion and adequate sleep.

To have that negatively impacted by picking up another bacteria from other CFer's - I don't see the risk benefit ratio being positive.

I go to clinic enough as it is - I don't need more exposure to CF germs. Especially when there's a great alernative to meeting in person called the internet.

Doing anything to compromise my lung health is otu of the question for me.

saveferris2009 · Sep 2, 2009

I wouldn't go. NO way, no how.
 
 Even if CFer's don't have MRSA or Cepacia, they can still give each other various PA strains - some can even be multi-drug resistant.
 
 I work for HOURS a day trying to keep my lungs healthy with my vest, nebs, exercise, proper nutrion and adequate sleep.
 
 To have that negatively impacted by picking up another bacteria from other CFer's - I don't see the risk benefit ratio being positive.
 
 I go to clinic enough as it is - I don't need more exposure to CF germs. Especially when there's a great alernative to meeting in person called the internet.
 
 Doing anything to compromise my lung health is otu of the question for me.

Jeana · Sep 2, 2009