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Round table Discussion of Atypical CF at National CF Conference in Anaheim..
- Thread starter amyr
- Start date
I am classified as atypical CF as I did not present like a classic CF'er. Most classic CF'er's are diagnosed as infants and young children, I was not.. I was diagnosed at 33 because I didn't have obvious CF symptoms until my lung damage became more significant. Of course now that my CF has progressed, I am treated just like any other classic CF'er with all of the typical meds, frequent IV's for frequent exacerbations and pneumonias etc. Just looking at my med list immediately rings CF, no doubt about it.
I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
Jenn 39 w/CF
I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
Jenn 39 w/CF
I am classified as atypical CF as I did not present like a classic CF'er. Most classic CF'er's are diagnosed as infants and young children, I was not.. I was diagnosed at 33 because I didn't have obvious CF symptoms until my lung damage became more significant. Of course now that my CF has progressed, I am treated just like any other classic CF'er with all of the typical meds, frequent IV's for frequent exacerbations and pneumonias etc. Just looking at my med list immediately rings CF, no doubt about it.
I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
Jenn 39 w/CF
I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
Jenn 39 w/CF
I am classified as atypical CF as I did not present like a classic CF'er. Most classic CF'er's are diagnosed as infants and young children, I was not.. I was diagnosed at 33 because I didn't have obvious CF symptoms until my lung damage became more significant. Of course now that my CF has progressed, I am treated just like any other classic CF'er with all of the typical meds, frequent IV's for frequent exacerbations and pneumonias etc. Just looking at my med list immediately rings CF, no doubt about it.
<br />I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
<br />I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
<br />Jenn 39 w/CF
<br />I also have borderline sweat tests, in the 50's and have one known mutation with a variant (I think lol), I guess that would be another reason why docs call my CF atypical as the classic CF'er normally has high sweat tests at least.
<br />I know that the term atypical CF is often debated.....I tend to believe CF is CF but with a wide spectrum of disease and symptoms.
<br />Jenn 39 w/CF
Bill, there is no official diagnosis of atypical CF. It is CF or it is not.
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
Bill, there is no official diagnosis of atypical CF. It is CF or it is not.
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
Bill, there is no official diagnosis of atypical CF. It is CF or it is not.
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
<br>
<br>That said, with the advent of diagnosis via genetic testing, many people who would have never been diagnosed 20 years ago are now gaining the CF label.
<br>
<br>In many (not all) cases their symptoms tend to be less aggressive early in life, and quite a few are diagnosed later in life. In addition, often they will have one or both mutations are some of the rarer ones; and thus presentation is different.
<br>
<br>As an example, the term 'Atypical' is used by many to differentiate from those that have a life expectancy in their 20's/30's and those that are not even diagnosed until after this age.
<br>
<br>That said, they often benefit from the same treatments and have some of the same problems so the use of the term can cause hard feelings and division so I personally try to avoid.
<br>
Hi Bill,
I have created a page in my website devoted "Atypical CF".
http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
I have created a page in my website devoted "Atypical CF".
http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
Hi Bill,
I have created a page in my website devoted "Atypical CF".
http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
I have created a page in my website devoted "Atypical CF".
http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
Hi Bill,
<br />I have created a page in my website devoted "Atypical CF".
<br />
<br />http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
<br />
<br />Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
<br />
<br />I have created a page in my website devoted "Atypical CF".
<br />
<br />http://www.connections4life.com/Atypical-Cystic-Fibrosis.html.
<br />
<br />Tom is correct that to date there is no "official" Atypical CF diagnosis, and as such today my three kids are medically coded as CF. I have been told by the CFF that they are in the process of creating a separate ICD9 code for Atypical CF to distinguish it from Classic CF. This process however, is a very long one from what I understand. Feel free to take a look at my website and the journal's I have put on there to help educate the public.
<br />
Only the non-CF Doctors refer to my case as atypical, but most Doctors just don't know any better. Because I'm 71, "of course something is different ie atypical".
<br />
<br />It becomes a great discussion and I know more about CF than they do (non-CF Doctors).
<br />
<br />Bill
<br />
<br />It becomes a great discussion and I know more about CF than they do (non-CF Doctors).
<br />
<br />Bill