It seems like there are a lot of people with ATypical CF. Sort of makes me think it's a lot more typical than not. <img src="i/expressions/face-icon-small-smile.gif" border="0"> With a growing population of adult CFers DXd as adults it would seem that Atypical CF is becoming more prevalent. I'd imagine that as genetic testing continues to grow in popularity there will be even more people presenting without the 'classical' symptoms DXd with CF. When does it stop being Atypical? <img src="i/expressions/face-icon-small-smile.gif" border="0">
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Is Atypical CF really all that uncommon?
- Thread starter Juliet
- Start date
It seems like there are a lot of people with ATypical CF. Sort of makes me think it's a lot more typical than not. <img src="i/expressions/face-icon-small-smile.gif" border="0"> With a growing population of adult CFers DXd as adults it would seem that Atypical CF is becoming more prevalent. I'd imagine that as genetic testing continues to grow in popularity there will be even more people presenting without the 'classical' symptoms DXd with CF. When does it stop being Atypical? <img src="i/expressions/face-icon-small-smile.gif" border="0">
It seems like there are a lot of people with ATypical CF. Sort of makes me think it's a lot more typical than not. <img src="i/expressions/face-icon-small-smile.gif" border="0"> With a growing population of adult CFers DXd as adults it would seem that Atypical CF is becoming more prevalent. I'd imagine that as genetic testing continues to grow in popularity there will be even more people presenting without the 'classical' symptoms DXd with CF. When does it stop being Atypical? <img src="i/expressions/face-icon-small-smile.gif" border="0">
It seems like there are a lot of people with ATypical CF. Sort of makes me think it's a lot more typical than not. <img src="i/expressions/face-icon-small-smile.gif" border="0"> With a growing population of adult CFers DXd as adults it would seem that Atypical CF is becoming more prevalent. I'd imagine that as genetic testing continues to grow in popularity there will be even more people presenting without the 'classical' symptoms DXd with CF. When does it stop being Atypical? <img src="i/expressions/face-icon-small-smile.gif" border="0">
It seems like there are a lot of people with ATypical CF. Sort of makes me think it's a lot more typical than not. <img src="i/expressions/face-icon-small-smile.gif" border="0"> With a growing population of adult CFers DXd as adults it would seem that Atypical CF is becoming more prevalent. I'd imagine that as genetic testing continues to grow in popularity there will be even more people presenting without the 'classical' symptoms DXd with CF. When does it stop being Atypical? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, it does seem to be happening more often, and yes I think it is due to more genes in the class 4 and 5 being found now.
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
Yes, it does seem to be happening more often, and yes I think it is due to more genes in the class 4 and 5 being found now.
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
Yes, it does seem to be happening more often, and yes I think it is due to more genes in the class 4 and 5 being found now.
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
Yes, it does seem to be happening more often, and yes I think it is due to more genes in the class 4 and 5 being found now.
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
Does that make sense?
Yes, it does seem to be happening more often, and yes I think it is due to more genes in the class 4 and 5 being found now.
<br />
<br />But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
<br />
<br />Does that make sense?
<br />
<br />But the thing about it being A-Typical doesn't refer to how often it is happening, it is referring to the number of symptoms and presentation of illness. When an A-Typical person presents with symptoms of CF they aren't all the classic and or severe symptoms. It has more to do with how many and what type of symptoms are showing up, not how often A-Typical cases show up.
<br />
<br />Does that make sense?
H
hopesiris
Guest
It never stops being atypical but hopefully more will be understood about it.
H
hopesiris
Guest
It never stops being atypical but hopefully more will be understood about it.
H
hopesiris
Guest
It never stops being atypical but hopefully more will be understood about it.
H
hopesiris
Guest
It never stops being atypical but hopefully more will be understood about it.
H
hopesiris
Guest
It never stops being atypical but hopefully more will be understood about it.
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Ahhhhh.... I am so delighted by this thread.
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
Ahhhhh.... I am so delighted by this thread.
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
Ahhhhh.... I am so delighted by this thread.
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
Ahhhhh.... I am so delighted by this thread.
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
Ahhhhh.... I am so delighted by this thread.
<br />
<br />CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
<br />
<br />I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
<br />
<br />Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
<br />
<br />
<br />But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
<br />
<br />denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>
<br />
<br />CF is CF. No two cases are the same. Many use the adjective "atypical" to make themselves feel better. Or they're misunderstood. If you can't tell, I think the label is ridiculous.
<br />
<br />I'm 26, My FEV1 is 98%. I've had IV's only 7 times in my life. Am I atypical? Nope. I have CF. I don't have a need to feel special or different than those other CFer's... I have CF but my CF is not that same as anyone else's just as no other two people's CF is the same.
<br />
<br />Ask some of the older CFer's in their late 30s and 40s on this site who were diagnosed with CF in their childhood..... they didn't need nebs or do chest PT etc etc until later in life. but now they do IV's often, some have had Tx and some might need them soon. so childhood presentation is in no way a predictor of what will occur at an older age.
<br />
<br />
<br />But as medicine for CF improves, preventative therapies applied, CFers who would have presented earlier in life now present later. in other words, just cuz your kid doesn't have PA or doesn't need IV's by their 2nd birthday doesn't mean this is an atypical case of CF. probably means great preventative medicine is being applied and if your kid was born 10 years earlier, symptoms would have presented earlier.
<br />
<br />denial is a strong phenomena - and in some cases can be harmless. what i worry about is denial interfering with 3 month clinic visits and rigorous preventative therapies due to the parents wanting to believe the children don't need them because they're that magic word some ignorant person uttered - <b><u> Atypical </b></u>