Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Just curious - what is the probable number? M Re: CF/WE ARE MANY! ....I have sent a letter to correcting the > information and giving him my g.i. doctor's (who treats many with cf) > estimate of the probable number of living persons with cystic fibrosis-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hal is right! Period. I have sent a letter to correcting the information and giving him my g.i. doctor's (who treats many with cf) estimate of the probable number of living persons with cystic fibrosis-- which is, after all, the most commonly found geneticly caused condition in the entire world--not just the usa nor nw Europe! Cheers! to Hal! Love, too, to all of the many of us who are obviously invisible! n Rojas CF It is satisfying to read that Senator (Dem., NC) wrote in response to the request for legislation sponsoring a CF recognition month (May). It angers me to read the out of date statistics still being dispense to the public from the CFF that there are only 30,000 persons in the U.S. with CF. (That goes back to the 1960's). They don't even recognize that I exist even though I am one of the volunteers for their statistical program. They also claim the mortality for those with CF averages out to thirty one years of age. That stuff might bring a tear and a donation, but it does not address the fact that there are hundreds if not thousands who have lived with CF for more than fifty years. I expect the Yale CF clinic to put me in a bottle on display upon my demise (I hope to use up all my organs by then, so I'm not a donor) , but if all goes well, on April 9th I'll be seventy three, and that sure messes up the CFF's statistics! Hal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Let me know if you did not get my private response! n Re: CF/WE ARE MANY! ...I have sent a letter to correcting the > information and giving him my g.i. doctor's (who treats many with cf) > estimate of the probable number of living persons with cystic fibrosis-- ------------------------------------------- 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 n, I'd like to know too, what is the probable number? Re: CF/WE ARE MANY! ...I have sent a letter to correcting the > information and giving him my g.i. doctor's (who treats many with cf) > estimate of the probable number of living persons with cystic fibrosis-- ------------------------------------------- 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 OOOOPS! 270,000! pays to proof read, n Rojas Re: CF/WE ARE MANY! ...I have sent a letter to correcting the > information and giving him my g.i. doctor's (who treats many with cf) > estimate of the probable number of living persons with cystic fibrosis-- ------------------------------------------- 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 9, 2004 Report Share Posted March 9, 2004 Hi n and Hal, How many people do you think we have in the US with CF? I don't know any other number than the 30,000 the CFF has been quoting forever. I'd like to have a better estimate. Thanks and love you both! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi, ! My unofficial guess for the number of persons with CF in the United States is approximately 97,611, with 872 fetuses on the way...and who knows what will happen tonight? Just kidding. I don't have a clue, but 30,000 is a ridiculous underestimation. It is probably three to four times that many based on the fact that the overwhelming number of children and adults with CF do not attend a CF clinic nor have been diagnosed. Most mutation testing (it's rarely done) is for less than 10% of the known mutations. Generally, the testing is done on those who have insurance coverage which leaves out at least six million children in the U.S. That's known as " compassionate conservatism. " Hal Re: CF/WE ARE MANY! Hi n and Hal, How many people do you think we have in the US with CF? I don't know any other number than the 30,000 the CFF has been quoting forever. I'd like to have a better estimate. Thanks and love you both! M Quote Link to comment Share on other sites More sharing options...
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