What is atypical cf?

T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>





I've seen the word "atypical" used by those who:







-Are scared of what CF can bring and it assuages their fears to use the word "atypical" in front of CF







-Don't want to put the preventative work into treating a CF child (aka I don't need to do CPT daily because the kid has atypical CF)







-Refuse to get a genetic diagnosis / don't really have CF</end quote></div>



I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>

Find a different doctor who understands what the hell CF actually is. Just because its a cf center doesn't mean all the docs have a thorough grasp on the concept of the disease. My mom always told me when I was younger that even though I was "healthy" (not really, but for the sake of the example) then, we did treatments so that I would go to college and lead a normal life.

Side note- If you don't do something now (I say this in a non condemning way, from personal experiance) you'll always wonder what you shoulda/coulda/oughta have done.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>





I've seen the word "atypical" used by those who:







-Are scared of what CF can bring and it assuages their fears to use the word "atypical" in front of CF







-Don't want to put the preventative work into treating a CF child (aka I don't need to do CPT daily because the kid has atypical CF)







-Refuse to get a genetic diagnosis / don't really have CF</end quote></div>



I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>

Find a different doctor who understands what the hell CF actually is. Just because its a cf center doesn't mean all the docs have a thorough grasp on the concept of the disease. My mom always told me when I was younger that even though I was "healthy" (not really, but for the sake of the example) then, we did treatments so that I would go to college and lead a normal life.

Side note- If you don't do something now (I say this in a non condemning way, from personal experiance) you'll always wonder what you shoulda/coulda/oughta have done.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>





I've seen the word "atypical" used by those who:







-Are scared of what CF can bring and it assuages their fears to use the word "atypical" in front of CF







-Don't want to put the preventative work into treating a CF child (aka I don't need to do CPT daily because the kid has atypical CF)







-Refuse to get a genetic diagnosis / don't really have CF</end quote></div>



I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>

Find a different doctor who understands what the hell CF actually is. Just because its a cf center doesn't mean all the docs have a thorough grasp on the concept of the disease. My mom always told me when I was younger that even though I was "healthy" (not really, but for the sake of the example) then, we did treatments so that I would go to college and lead a normal life.

Side note- If you don't do something now (I say this in a non condemning way, from personal experiance) you'll always wonder what you shoulda/coulda/oughta have done.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>





I've seen the word "atypical" used by those who:







-Are scared of what CF can bring and it assuages their fears to use the word "atypical" in front of CF







-Don't want to put the preventative work into treating a CF child (aka I don't need to do CPT daily because the kid has atypical CF)







-Refuse to get a genetic diagnosis / don't really have CF</end quote>



I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>

Find a different doctor who understands what the hell CF actually is. Just because its a cf center doesn't mean all the docs have a thorough grasp on the concept of the disease. My mom always told me when I was younger that even though I was "healthy" (not really, but for the sake of the example) then, we did treatments so that I would go to college and lead a normal life.

Side note- If you don't do something now (I say this in a non condemning way, from personal experiance) you'll always wonder what you shoulda/coulda/oughta have done.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
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<br />I've seen the word "atypical" used by those who:
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />-Are scared of what CF can bring and it assuages their fears to use the word "atypical" in front of CF
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />-Don't want to put the preventative work into treating a CF child (aka I don't need to do CPT daily because the kid has atypical CF)
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />-Refuse to get a genetic diagnosis / don't really have CF</end quote>
<br />
<br />
<br />
<br />I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".
<br />
<br />
<br />
<br />So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>
<br />
<br />Find a different doctor who understands what the hell CF actually is. Just because its a cf center doesn't mean all the docs have a thorough grasp on the concept of the disease. My mom always told me when I was younger that even though I was "healthy" (not really, but for the sake of the example) then, we did treatments so that I would go to college and lead a normal life.
<br />
<br />Side note- If you don't do something now (I say this in a non condemning way, from personal experiance) you'll always wonder what you shoulda/coulda/oughta have done.
 
C

ctalbott0609

New member
I have to agree with just about everything being said here. Especially with Harriett and Amy (Saveferris). Harriett has this nailed from a medical aspect and Amy from a normal non-medical one. However, I agree more then anything with Tarheel (sorry I can't remember your name<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) you need to find a Dr. who understands this disease from more then just a textbook pov. As our Dr. said "You can't pin the word 'mild' on a disease that WILL kill you." You either have Cystic Fibrosis or you don't. If you're GOING to die from Cystic Fibrosis or the lung failure that it goes hand in hand with...then you have it. If you have all of the symptoms, but you'll die at the age 0f 80+ from a broken hip etc. with perfect lung function, and pancreatic sufficiency...then you don't have this disease. Atypical should be taken off the books completely. So should the world Mild. It's nothing but grounds to start a war, as I'm sure this is what this thread will become. I can already hear Mel in the back of my head.
 
C

ctalbott0609

New member
I have to agree with just about everything being said here. Especially with Harriett and Amy (Saveferris). Harriett has this nailed from a medical aspect and Amy from a normal non-medical one. However, I agree more then anything with Tarheel (sorry I can't remember your name<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) you need to find a Dr. who understands this disease from more then just a textbook pov. As our Dr. said "You can't pin the word 'mild' on a disease that WILL kill you." You either have Cystic Fibrosis or you don't. If you're GOING to die from Cystic Fibrosis or the lung failure that it goes hand in hand with...then you have it. If you have all of the symptoms, but you'll die at the age 0f 80+ from a broken hip etc. with perfect lung function, and pancreatic sufficiency...then you don't have this disease. Atypical should be taken off the books completely. So should the world Mild. It's nothing but grounds to start a war, as I'm sure this is what this thread will become. I can already hear Mel in the back of my head.
 
C

ctalbott0609

New member
I have to agree with just about everything being said here. Especially with Harriett and Amy (Saveferris). Harriett has this nailed from a medical aspect and Amy from a normal non-medical one. However, I agree more then anything with Tarheel (sorry I can't remember your name<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) you need to find a Dr. who understands this disease from more then just a textbook pov. As our Dr. said "You can't pin the word 'mild' on a disease that WILL kill you." You either have Cystic Fibrosis or you don't. If you're GOING to die from Cystic Fibrosis or the lung failure that it goes hand in hand with...then you have it. If you have all of the symptoms, but you'll die at the age 0f 80+ from a broken hip etc. with perfect lung function, and pancreatic sufficiency...then you don't have this disease. Atypical should be taken off the books completely. So should the world Mild. It's nothing but grounds to start a war, as I'm sure this is what this thread will become. I can already hear Mel in the back of my head.
 
C

ctalbott0609

New member
I have to agree with just about everything being said here. Especially with Harriett and Amy (Saveferris). Harriett has this nailed from a medical aspect and Amy from a normal non-medical one. However, I agree more then anything with Tarheel (sorry I can't remember your name<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) you need to find a Dr. who understands this disease from more then just a textbook pov. As our Dr. said "You can't pin the word 'mild' on a disease that WILL kill you." You either have Cystic Fibrosis or you don't. If you're GOING to die from Cystic Fibrosis or the lung failure that it goes hand in hand with...then you have it. If you have all of the symptoms, but you'll die at the age 0f 80+ from a broken hip etc. with perfect lung function, and pancreatic sufficiency...then you don't have this disease. Atypical should be taken off the books completely. So should the world Mild. It's nothing but grounds to start a war, as I'm sure this is what this thread will become. I can already hear Mel in the back of my head.
 
C

ctalbott0609

New member
I have to agree with just about everything being said here. Especially with Harriett and Amy (Saveferris). Harriett has this nailed from a medical aspect and Amy from a normal non-medical one. However, I agree more then anything with Tarheel (sorry I can't remember your name<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) you need to find a Dr. who understands this disease from more then just a textbook pov. As our Dr. said "You can't pin the word 'mild' on a disease that WILL kill you." You either have Cystic Fibrosis or you don't. If you're GOING to die from Cystic Fibrosis or the lung failure that it goes hand in hand with...then you have it. If you have all of the symptoms, but you'll die at the age 0f 80+ from a broken hip etc. with perfect lung function, and pancreatic sufficiency...then you don't have this disease. Atypical should be taken off the books completely. So should the world Mild. It's nothing but grounds to start a war, as I'm sure this is what this thread will become. I can already hear Mel in the back of my head.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>


I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>


SHAME ON THAT DOCTOR.

To have the arrogance to think you can predict clinical outcome from genes is completely against both American and European consensus regarding genotype/phenotype correlations.

Seriously - there are published papers in many journals by well respected CF specialists stating CLEARLY that it's irresponsible to give a clinical outcome prediction based on anything, including genes.

I think it's down right harmful and foolish.

If your child has lung issues down the road (which I hope isn't the case) you will have HUGE regrets for not being proactive with CPT and other medications to prevent lung issues.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>


I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>


SHAME ON THAT DOCTOR.

To have the arrogance to think you can predict clinical outcome from genes is completely against both American and European consensus regarding genotype/phenotype correlations.

Seriously - there are published papers in many journals by well respected CF specialists stating CLEARLY that it's irresponsible to give a clinical outcome prediction based on anything, including genes.

I think it's down right harmful and foolish.

If your child has lung issues down the road (which I hope isn't the case) you will have HUGE regrets for not being proactive with CPT and other medications to prevent lung issues.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>


I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>


SHAME ON THAT DOCTOR.

To have the arrogance to think you can predict clinical outcome from genes is completely against both American and European consensus regarding genotype/phenotype correlations.

Seriously - there are published papers in many journals by well respected CF specialists stating CLEARLY that it's irresponsible to give a clinical outcome prediction based on anything, including genes.

I think it's down right harmful and foolish.

If your child has lung issues down the road (which I hope isn't the case) you will have HUGE regrets for not being proactive with CPT and other medications to prevent lung issues.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>


I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".



So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>


SHAME ON THAT DOCTOR.

To have the arrogance to think you can predict clinical outcome from genes is completely against both American and European consensus regarding genotype/phenotype correlations.

Seriously - there are published papers in many journals by well respected CF specialists stating CLEARLY that it's irresponsible to give a clinical outcome prediction based on anything, including genes.

I think it's down right harmful and foolish.

If your child has lung issues down the road (which I hope isn't the case) you will have HUGE regrets for not being proactive with CPT and other medications to prevent lung issues.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>
<br />
<br />
<br />I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".
<br />
<br />
<br />
<br />So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>
<br />
<br />
<br />SHAME ON THAT DOCTOR.
<br />
<br />To have the arrogance to think you can predict clinical outcome from genes is completely against both American and European consensus regarding genotype/phenotype correlations.
<br />
<br />Seriously - there are published papers in many journals by well respected CF specialists stating CLEARLY that it's irresponsible to give a clinical outcome prediction based on anything, including genes.
<br />
<br />I think it's down right harmful and foolish.
<br />
<br />If your child has lung issues down the road (which I hope isn't the case) you will have HUGE regrets for not being proactive with CPT and other medications to prevent lung issues.
 
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