Sevenstars
New member
Go to your local library (or bookstore) and get Cystic Fibrosis: A Guide for Patients and Family by Dr. David Orenstein. (my childhood doc!) Amazing book, and it will tell you all the "basics" to get you started. I'm suprised you can't find anything online regarding general cf information. The CF Foundation site has nothing? Wiki?
For the other questions:
-I receive SSI which helps a TON.
-Massage? I guess you mean therapy using the vest, a percussor, or manual CPT? Yes, your doctor or respiratory therapist teaches you those things when you are first diagnosed. We are usually taught the nuts and bolts of care - medications, etc, but I personally haven't been taught how to 'cope' bye any CF care person. I'm not sure they'd be able to help a whole lot in that area anyway, to be honest.
- Yes, you are looking at it. <img src="i/expressions/face-icon-small-wink.gif" border="0">
- Sadly meetings and groups of people with CF are mostly discouraged now. When I was a child there were CF camps in the summer (just like any other kind of summer camp) but it was soon discovered that there were huuge cross-contamination risks. People with CF should not generally be around each other in an enclosed area unless they are wearing masks, since their bacteria are communicable to each other (but not to most other people, except immunocomprimised patients etc). There is more to it than that, but that is the long and the short of it. There ARE still get togethers, such as the Great Strides walk which takes place once a year, and other fund raisers and things like that.
For the other questions:
-I receive SSI which helps a TON.
-Massage? I guess you mean therapy using the vest, a percussor, or manual CPT? Yes, your doctor or respiratory therapist teaches you those things when you are first diagnosed. We are usually taught the nuts and bolts of care - medications, etc, but I personally haven't been taught how to 'cope' bye any CF care person. I'm not sure they'd be able to help a whole lot in that area anyway, to be honest.
- Yes, you are looking at it. <img src="i/expressions/face-icon-small-wink.gif" border="0">
- Sadly meetings and groups of people with CF are mostly discouraged now. When I was a child there were CF camps in the summer (just like any other kind of summer camp) but it was soon discovered that there were huuge cross-contamination risks. People with CF should not generally be around each other in an enclosed area unless they are wearing masks, since their bacteria are communicable to each other (but not to most other people, except immunocomprimised patients etc). There is more to it than that, but that is the long and the short of it. There ARE still get togethers, such as the Great Strides walk which takes place once a year, and other fund raisers and things like that.