Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 I would also like to know the probable number of persons with CF. She beat me to the question. Hopefully with the passing of CF awareness month in May, we can educate more people about Cystic Fibrosis. Our awareness brochure IF I remember correctly says 30,000 and I have seen other information printed with this number also? I written other letters and this is the only response I have gotten. I have interiewed when I worked as local news and talk show host. He was very personable way before I got an interview with him. I am happy that he is voting for us not against us. Crystal (mother of 2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi: Your " awareness bulletin " repeats what the CFF gives out as they are supposedly the only source for statistics. They get their information from the CF clinics that they certify which would infer that those who have CF only go to the CFF certified clinics. As most adults with CF do not have a certified adult clinic available, you can use your own judgment as to how many CF adults there are who do not go to a certified clinic. As I mentioned before, though the population of the United States has increased by over fifty million since the early 1960's, the number of persons with CF has stayed static according to the CFF statistics. If you use only the pediatric patients with CF as a basis and exclude adults not going to a CF adult clinic, you can thus repeat the same statistics forever. Hal n--Question I would also like to know the probable number of persons with CF. She beat me to the question. Hopefully with the passing of CF awareness month in May, we can educate more people about Cystic Fibrosis. Our awareness brochure IF I remember correctly says 30,000 and I have seen other information printed with this number also? I written other letters and this is the only response I have gotten. I have interiewed when I worked as local news and talk show host. He was very personable way before I got an interview with him. I am happy that he is voting for us not against us. Crystal (mother of 2) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Your very right Hal, In fact a great many peds DONT go to a CF Center either. In FL. we have many that go to several other centers, NOT considered CFF accredited.............The docs have actually worked in those before............ I would say that number is at least 1/3 more... Hi to Phyllis-- & I sure hope your doing well . LOVE & HUGS, GRDMBEV n--Question I would also like to know the probable number of persons with CF. She beat me to the question. Hopefully with the passing of CF awareness month in May, we can educate more people about Cystic Fibrosis. Our awareness brochure IF I remember correctly says 30,000 and I have seen other information printed with this number also? I written other letters and this is the only response I have gotten. I have interiewed when I worked as local news and talk show host. He was very personable way before I got an interview with him. I am happy that he is voting for us not against us. Crystal (mother of 2) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Thanks Bev! Phyllis and I are packing our suitcases to go visit our daughter in Hawaii. One suitcase for our clothes and two for our pills! Whatever it takes! The late comedian Grocho Marx once said, he'd never join a country club that would let him in. Maybe CF is no longer an exclusive disease for us select few! Once we let the riff raff in...there goes the neighborhood! Hal n--Question I would also like to know the probable number of persons with CF. She beat me to the question. Hopefully with the passing of CF awareness month in May, we can educate more people about Cystic Fibrosis. Our awareness brochure IF I remember correctly says 30,000 and I have seen other information printed with this number also? I written other letters and this is the only response I have gotten. I have interiewed when I worked as local news and talk show host. He was very personable way before I got an interview with him. I am happy that he is voting for us not against us. Crystal (mother of 2) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Have a great time. It will; be glorious!! LOVE & HUGS, GrandmoMBEV Re: n--Question Thanks Bev! Phyllis and I are packing our suitcases to go visit our daughter in Hawaii. One suitcase for our clothes and two for our pills! Whatever it takes! The late comedian Grocho Marx once said, he'd never join a country club that would let him in. Maybe CF is no longer an exclusive disease for us select few! Once we let the riff raff in...there goes the neighborhood! Hal n--Question I would also like to know the probable number of persons with CF. She beat me to the question. Hopefully with the passing of CF awareness month in May, we can educate more people about Cystic Fibrosis. Our awareness brochure IF I remember correctly says 30,000 and I have seen other information printed with this number also? I written other letters and this is the only response I have gotten. I have interiewed when I worked as local news and talk show host. He was very personable way before I got an interview with him. I am happy that he is voting for us not against us. Crystal (mother of 2) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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