What is atypical cf?

[MiddleAgedLady]

I was never called atypical but was considered to have a 'mild' case of CF. It wasn't so much that I didn't have enough of the symptoms before I was diagnosed but more that the doctors kept thinking I wasn't "sick enough" to have CF.

 

[MiddleAgedLady]

I was never called atypical but was considered to have a 'mild' case of CF. It wasn't so much that I didn't have enough of the symptoms before I was diagnosed but more that the doctors kept thinking I wasn't "sick enough" to have CF.

 

[MiddleAgedLady]

I was never called atypical but was considered to have a 'mild' case of CF. It wasn't so much that I didn't have enough of the symptoms before I was diagnosed but more that the doctors kept thinking I wasn't "sick enough" to have CF.

 

[MiddleAgedLady]

I was never called atypical but was considered to have a 'mild' case of CF. It wasn't so much that I didn't have enough of the symptoms before I was diagnosed but more that the doctors kept thinking I wasn't "sick enough" to have CF.

 

[MiddleAgedLady]

I was never called atypical but was considered to have a 'mild' case of CF. It wasn't so much that I didn't have enough of the symptoms before I was diagnosed but more that the doctors kept thinking I wasn't "sick enough" to have CF.

 

[Sakem]

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

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".</end quote></div>

Michelle,
Do u not still go 2 the same doctor that diagnoised you? I've just alwats assumed u did, since he was the only brilliant one to diagnose you. If not, then were you able to find another doctor that confirmed your diagnoisis or just not currently being treated by a CF doctor since you have no CF symptoms?

 

[Sakem]

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

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".</end quote></div>

Michelle,
Do u not still go 2 the same doctor that diagnoised you? I've just alwats assumed u did, since he was the only brilliant one to diagnose you. If not, then were you able to find another doctor that confirmed your diagnoisis or just not currently being treated by a CF doctor since you have no CF symptoms?

 

[Sakem]

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

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".</end quote></div>

Michelle,
Do u not still go 2 the same doctor that diagnoised you? I've just alwats assumed u did, since he was the only brilliant one to diagnose you. If not, then were you able to find another doctor that confirmed your diagnoisis or just not currently being treated by a CF doctor since you have no CF symptoms?

 

[Sakem]

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

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".</end quote>

Michelle,
Do u not still go 2 the same doctor that diagnoised you? I've just alwats assumed u did, since he was the only brilliant one to diagnose you. If not, then were you able to find another doctor that confirmed your diagnoisis or just not currently being treated by a CF doctor since you have no CF symptoms?

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>
<br />
<br />I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".</end quote>
<br />
<br />Michelle,
<br />Do u not still go 2 the same doctor that diagnoised you? I've just alwats assumed u did, since he was the only brilliant one to diagnose you. If not, then were you able to find another doctor that confirmed your diagnoisis or just not currently being treated by a CF doctor since you have no CF symptoms?

 

[LouLou]

</end quote></div>
a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". </end quote></div>


One of the scarier parts of all this atypical...CFTR Metabolic Discrder type diagnoses is that the insurance companies are goihng to EAT IT UP. They will love slapping a big fat DENIAL on any claims that they view as too CF instead of CFTRMD. I have a sonn with potentially CFTRMD We do nebs and vest anyway - because it doesn't hurt and might help - and don't fight for any diagnosis or not diagnosis so that he can receive the best care possible at an accredited CF center. Be careful what you wish for!

 

[LouLou]

</end quote></div>
a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". </end quote></div>


One of the scarier parts of all this atypical...CFTR Metabolic Discrder type diagnoses is that the insurance companies are goihng to EAT IT UP. They will love slapping a big fat DENIAL on any claims that they view as too CF instead of CFTRMD. I have a sonn with potentially CFTRMD We do nebs and vest anyway - because it doesn't hurt and might help - and don't fight for any diagnosis or not diagnosis so that he can receive the best care possible at an accredited CF center. Be careful what you wish for!

 

[LouLou]

</end quote></div>
a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". </end quote></div>


One of the scarier parts of all this atypical...CFTR Metabolic Discrder type diagnoses is that the insurance companies are goihng to EAT IT UP. They will love slapping a big fat DENIAL on any claims that they view as too CF instead of CFTRMD. I have a sonn with potentially CFTRMD We do nebs and vest anyway - because it doesn't hurt and might help - and don't fight for any diagnosis or not diagnosis so that he can receive the best care possible at an accredited CF center. Be careful what you wish for!

 

[LouLou]

</end quote>
a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". </end quote>


One of the scarier parts of all this atypical...CFTR Metabolic Discrder type diagnoses is that the insurance companies are goihng to EAT IT UP. They will love slapping a big fat DENIAL on any claims that they view as too CF instead of CFTRMD. I have a sonn with potentially CFTRMD We do nebs and vest anyway - because it doesn't hurt and might help - and don't fight for any diagnosis or not diagnosis so that he can receive the best care possible at an accredited CF center. Be careful what you wish for!

 

[LouLou]

</end quote>
<br /> a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". </end quote>
<br />
<br />
<br />One of the scarier parts of all this atypical...CFTR Metabolic Discrder type diagnoses is that the insurance companies are goihng to EAT IT UP. They will love slapping a big fat DENIAL on any claims that they view as too CF instead of CFTRMD. I have a sonn with potentially CFTRMD We do nebs and vest anyway - because it doesn't hurt and might help - and don't fight for any diagnosis or not diagnosis so that he can receive the best care possible at an accredited CF center. Be careful what you wish for!

 

[LouLou]

This discussion is about "atypical" cf or more recently at CF conferences refered to as CFTR Metabolic Disorder. Being called "mild" is something else completely.

Lung disease severity in cf patients are labeled in the following way:
Mild = >70% FEV1
Moderate = 50%-69% FEV1
Severe = <50% FEV1

This "labeling" is being used less and less because of the very nature of cf and how one infection can completely change the situation. It doesn't seem that there is any benefit to having one of these labels on your medical record.

 

[LouLou]

This discussion is about "atypical" cf or more recently at CF conferences refered to as CFTR Metabolic Disorder. Being called "mild" is something else completely.

Lung disease severity in cf patients are labeled in the following way:
Mild = >70% FEV1
Moderate = 50%-69% FEV1
Severe = <50% FEV1

This "labeling" is being used less and less because of the very nature of cf and how one infection can completely change the situation. It doesn't seem that there is any benefit to having one of these labels on your medical record.

 

[LouLou]

This discussion is about "atypical" cf or more recently at CF conferences refered to as CFTR Metabolic Disorder. Being called "mild" is something else completely.

Lung disease severity in cf patients are labeled in the following way:
Mild = >70% FEV1
Moderate = 50%-69% FEV1
Severe = <50% FEV1

This "labeling" is being used less and less because of the very nature of cf and how one infection can completely change the situation. It doesn't seem that there is any benefit to having one of these labels on your medical record.

 

[LouLou]

This discussion is about "atypical" cf or more recently at CF conferences refered to as CFTR Metabolic Disorder. Being called "mild" is something else completely.

Lung disease severity in cf patients are labeled in the following way:
Mild = >70% FEV1
Moderate = 50%-69% FEV1
Severe = <50% FEV1

This "labeling" is being used less and less because of the very nature of cf and how one infection can completely change the situation. It doesn't seem that there is any benefit to having one of these labels on your medical record.

 

[LouLou]

This discussion is about "atypical" cf or more recently at CF conferences refered to as CFTR Metabolic Disorder. Being called "mild" is something else completely.
<br />
<br />Lung disease severity in cf patients are labeled in the following way:
<br />Mild = >70% FEV1
<br />Moderate = 50%-69% FEV1
<br />Severe = <50% FEV1
<br />
<br />This "labeling" is being used less and less because of the very nature of cf and how one infection can completely change the situation. It doesn't seem that there is any benefit to having one of these labels on your medical record.