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Round table Discussion of Atypical CF at National CF Conference in Anaheim..
- Thread starter amyr
- Start date
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
<br /> I have never been or heard any Doc us the term " a typical Cf "
<br />
<br /> I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
<br /> Is that A Typical ?
<br /> I have never been or heard any Doc us the term " a typical Cf "
<br />
<br /> I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
<br /> Is that A Typical ?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Brad</b></i>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote></div><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote></div><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Brad</b></i>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Brad</b></i>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
I was Dx at 8 yrs old, I am now 54 and in all my years I have seen Docs at Children's in DC, Charlottesville Va and Georgetown.
I have never been or heard any Doc us the term " a typical Cf "
I started having lung issues when I was a baby, it was passed off as Chronic Bronchitis until I met Dr K at Children's in DC.,, I am pancreatic sufficient , I maintain weight and gain with no problem. My main issues are in the lungs.
Is that A Typical ?</end quote><br><br>Brad, I would consider you classic CF. Age is not enough; we had a well known member here who was DDF508 (no more classic than that) that lived to her early 40's.<br><br>You were dx'd as a child, which means two things 1) you showed symptoms that were fairly clear and 2) you failed a sweat test. 45 years ago that is how you got the label, and the care that has kept you kicking. <br><br>In comparison, many (but not all) a-typical CF diagnoses would not occur without genetic testing as the symptoms are not clear enough and sweat tests tend to be borderline.<br><br><br>
Thanks for your response Brad. You are such a good example of the spectrum that exists within this disease. I know two brothers that both have Classic CF, both are double Delta508. One has pretty much just digestive issues with little to no lung involvement and the other one has No digestive issues and is all lung. I am not a medical professional nor would I ever try to lable someone so I won't comment as to whether or not you are Atypical, but I will say that my goal is to try to educate and raise as much awareness of CF and the varients of CF.
Thanks for your response Brad. You are such a good example of the spectrum that exists within this disease. I know two brothers that both have Classic CF, both are double Delta508. One has pretty much just digestive issues with little to no lung involvement and the other one has No digestive issues and is all lung. I am not a medical professional nor would I ever try to lable someone so I won't comment as to whether or not you are Atypical, but I will say that my goal is to try to educate and raise as much awareness of CF and the varients of CF.
Thanks for your response Brad. You are such a good example of the spectrum that exists within this disease. I know two brothers that both have Classic CF, both are double Delta508. One has pretty much just digestive issues with little to no lung involvement and the other one has No digestive issues and is all lung. I am not a medical professional nor would I ever try to lable someone so I won't comment as to whether or not you are Atypical, but I will say that my goal is to try to educate and raise as much awareness of CF and the varients of CF.
I didn't see the other responses only Brads, Bill, I hope the journals are helpful! Unfortunately, I know more than I would like to about CF and I often find myself educating my children's doctors. My children's pediatrician contacted me not long ago to ask me some questions about CF/Atypical CF because she had a patient that continued to stump her.
I didn't see the other responses only Brads, Bill, I hope the journals are helpful! Unfortunately, I know more than I would like to about CF and I often find myself educating my children's doctors. My children's pediatrician contacted me not long ago to ask me some questions about CF/Atypical CF because she had a patient that continued to stump her.
I didn't see the other responses only Brads, Bill, I hope the journals are helpful! Unfortunately, I know more than I would like to about CF and I often find myself educating my children's doctors. My children's pediatrician contacted me not long ago to ask me some questions about CF/Atypical CF because she had a patient that continued to stump her.
My Sweat tests were also boarder line...
I have 2 older Brothers who have passed , one at 27 the other at almost 61.
The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
The Brother that passed at 27 had heart and lung issues, Mostly Lung.
I also have a younger Sister who has some pancreatic issues and little Lung issues.
I would add that my Mother DX My Oldest Brother and my self a cpl years before the
Docs did.. They called Her and Over Protective Mother.
She did Her research Library in the early 60s. I think She missed Her calling.
I have 2 older Brothers who have passed , one at 27 the other at almost 61.
The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
The Brother that passed at 27 had heart and lung issues, Mostly Lung.
I also have a younger Sister who has some pancreatic issues and little Lung issues.
I would add that my Mother DX My Oldest Brother and my self a cpl years before the
Docs did.. They called Her and Over Protective Mother.
She did Her research Library in the early 60s. I think She missed Her calling.
My Sweat tests were also boarder line...
I have 2 older Brothers who have passed , one at 27 the other at almost 61.
The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
The Brother that passed at 27 had heart and lung issues, Mostly Lung.
I also have a younger Sister who has some pancreatic issues and little Lung issues.
I would add that my Mother DX My Oldest Brother and my self a cpl years before the
Docs did.. They called Her and Over Protective Mother.
She did Her research Library in the early 60s. I think She missed Her calling.
I have 2 older Brothers who have passed , one at 27 the other at almost 61.
The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
The Brother that passed at 27 had heart and lung issues, Mostly Lung.
I also have a younger Sister who has some pancreatic issues and little Lung issues.
I would add that my Mother DX My Oldest Brother and my self a cpl years before the
Docs did.. They called Her and Over Protective Mother.
She did Her research Library in the early 60s. I think She missed Her calling.
My Sweat tests were also boarder line...
<br />
<br /> I have 2 older Brothers who have passed , one at 27 the other at almost 61.
<br /> The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
<br /> The Brother that passed at 27 had heart and lung issues, Mostly Lung.
<br />
<br /> I also have a younger Sister who has some pancreatic issues and little Lung issues.
<br />
<br /> I would add that my Mother DX My Oldest Brother and my self a cpl years before the
<br /> Docs did.. They called Her and Over Protective Mother.
<br /> She did Her research Library in the early 60s. I think She missed Her calling.
<br />
<br /> I have 2 older Brothers who have passed , one at 27 the other at almost 61.
<br /> The one who passed at almost 61 had pancreatic and stomach and later more lung issues.
<br /> The Brother that passed at 27 had heart and lung issues, Mostly Lung.
<br />
<br /> I also have a younger Sister who has some pancreatic issues and little Lung issues.
<br />
<br /> I would add that my Mother DX My Oldest Brother and my self a cpl years before the
<br /> Docs did.. They called Her and Over Protective Mother.
<br /> She did Her research Library in the early 60s. I think She missed Her calling.
My daughter is also atypical cf. She has had two borderline sweats, two cf gene mutations - one disease causing the other originally thought not to be disease causing but they know now that neither gene works right. Positive cf results in colon tissue testing. Her main symptoms are currently GI. She's had bowel resection surgery and is still on laxatives to have a bm. She is failure to thrive and is on pacreatic enzymes - creon.
Thanks Amyr for the post. I couldn't get into the article though.
Thanks Amyr for the post. I couldn't get into the article though.