Is Atypical CF really all that uncommon?

Skye · Jun 7, 2008

I messed up the quote. This was posted originally by NoExcuses and I agree wholeheartedly! Well said.

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 - Atypical </end quote></div>

I would also like to add:
I have had many people ask me if I have a "mild" form of CF in my lifetime. There is not a "mild" form. You have CF or you don't. It is a dangerous journey to treat Cystic Fibrosis with anything less than all the amunition you have everyday.

Skye · Jun 7, 2008

I messed up the quote. This was posted originally by NoExcuses and I agree wholeheartedly! Well said.

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 - Atypical </end quote></div>

I would also like to add:
I have had many people ask me if I have a "mild" form of CF in my lifetime. There is not a "mild" form. You have CF or you don't. It is a dangerous journey to treat Cystic Fibrosis with anything less than all the amunition you have everyday.

Skye · Jun 7, 2008

I messed up the quote. This was posted originally by NoExcuses and I agree wholeheartedly! Well said.

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 - Atypical </end quote></div>

I would also like to add:
I have had many people ask me if I have a "mild" form of CF in my lifetime. There is not a "mild" form. You have CF or you don't. It is a dangerous journey to treat Cystic Fibrosis with anything less than all the amunition you have everyday.

Skye · Jun 7, 2008

I messed up the quote. This was posted originally by NoExcuses and I agree wholeheartedly! Well said.

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 - Atypical </end quote>

I would also like to add:
I have had many people ask me if I have a "mild" form of CF in my lifetime. There is not a "mild" form. You have CF or you don't. It is a dangerous journey to treat Cystic Fibrosis with anything less than all the amunition you have everyday.

Skye · Jun 7, 2008

I messed up the quote. This was posted originally by NoExcuses and I agree wholeheartedly! Well said.
 
 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 - Atypical </end quote>
 
 I would also like to add:
 I have had many people ask me if I have a "mild" form of CF in my lifetime. There is not a "mild" form. You have CF or you don't. It is a dangerous journey to treat Cystic Fibrosis with anything less than all the amunition you have everyday.

JazzysMom · Jun 7, 2008

Another mention here is some of our older diagnosed patients werent diagnosed due to ignorance in the medical field.

Yes they might not have had "severe" symptoms, but they had enough or frequent enough issues that CF should have at least been "ruled out" long before the dx was made.

CF can mimic many illnesses for awhile, but eventually you have to start wondering.......

I do agree with Amy overall in CF is CF. Some might have the "fortune" to ride freely longer then any one else, but eventually IMHO CF will catch up.

MAYBE with certain mutations it will take a lot longer, but its still progressive & none the less CF!

JazzysMom · Jun 7, 2008

Another mention here is some of our older diagnosed patients werent diagnosed due to ignorance in the medical field.

Yes they might not have had "severe" symptoms, but they had enough or frequent enough issues that CF should have at least been "ruled out" long before the dx was made.

CF can mimic many illnesses for awhile, but eventually you have to start wondering.......

I do agree with Amy overall in CF is CF. Some might have the "fortune" to ride freely longer then any one else, but eventually IMHO CF will catch up.

MAYBE with certain mutations it will take a lot longer, but its still progressive & none the less CF!

JazzysMom · Jun 7, 2008

Another mention here is some of our older diagnosed patients werent diagnosed due to ignorance in the medical field.

Yes they might not have had "severe" symptoms, but they had enough or frequent enough issues that CF should have at least been "ruled out" long before the dx was made.

CF can mimic many illnesses for awhile, but eventually you have to start wondering.......

I do agree with Amy overall in CF is CF. Some might have the "fortune" to ride freely longer then any one else, but eventually IMHO CF will catch up.

MAYBE with certain mutations it will take a lot longer, but its still progressive & none the less CF!

JazzysMom · Jun 7, 2008

Another mention here is some of our older diagnosed patients werent diagnosed due to ignorance in the medical field.

Yes they might not have had "severe" symptoms, but they had enough or frequent enough issues that CF should have at least been "ruled out" long before the dx was made.

CF can mimic many illnesses for awhile, but eventually you have to start wondering.......

I do agree with Amy overall in CF is CF. Some might have the "fortune" to ride freely longer then any one else, but eventually IMHO CF will catch up.

MAYBE with certain mutations it will take a lot longer, but its still progressive & none the less CF!

JazzysMom · Jun 7, 2008

Another mention here is some of our older diagnosed patients werent diagnosed due to ignorance in the medical field.
 
 Yes they might not have had "severe" symptoms, but they had enough or frequent enough issues that CF should have at least been "ruled out" long before the dx was made.
 
 CF can mimic many illnesses for awhile, but eventually you have to start wondering.......
 
 I do agree with Amy overall in CF is CF. Some might have the "fortune" to ride freely longer then any one else, but eventually IMHO CF will catch up.
 
 MAYBE with certain mutations it will take a lot longer, but its still progressive & none the less CF!

chrissyd · Jun 7, 2008

I looked up atypical and the "medical" meaning listed is:
Atypical: Not typical, not usual, not normal,
abnormal. Atypical is often used to refer to
the appearance of precancerous or cancerous
cells.
Or from Websters
Main Entry: atyp·i·cal
Pronunciation: \(?)?-?ti-pi-k?l\
Function: adjective
Date: 1885
:not typical : irregular, unusual

I wasn't diagnosed with CF until I was 21 beacause I had atypical symptoms; not because I had atypical CF. Like Amy said CF is CF, and although back when I was younger my symptoms were considered atypical; now a days, it is more common than not.
(At least thats how I always looked at it)

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 7, 2008

I looked up atypical and the "medical" meaning listed is:
Atypical: Not typical, not usual, not normal,
abnormal. Atypical is often used to refer to
the appearance of precancerous or cancerous
cells.
Or from Websters
Main Entry: atyp·i·cal
Pronunciation: \(?)?-?ti-pi-k?l\
Function: adjective
Date: 1885
:not typical : irregular, unusual

I wasn't diagnosed with CF until I was 21 beacause I had atypical symptoms; not because I had atypical CF. Like Amy said CF is CF, and although back when I was younger my symptoms were considered atypical; now a days, it is more common than not.
(At least thats how I always looked at it)

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 7, 2008

I looked up atypical and the "medical" meaning listed is:
Atypical: Not typical, not usual, not normal,
abnormal. Atypical is often used to refer to
the appearance of precancerous or cancerous
cells.
Or from Websters
Main Entry: atyp·i·cal
Pronunciation: \(?)?-?ti-pi-k?l\
Function: adjective
Date: 1885
:not typical : irregular, unusual

I wasn't diagnosed with CF until I was 21 beacause I had atypical symptoms; not because I had atypical CF. Like Amy said CF is CF, and although back when I was younger my symptoms were considered atypical; now a days, it is more common than not.
(At least thats how I always looked at it)

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 7, 2008

I looked up atypical and the "medical" meaning listed is:
Atypical: Not typical, not usual, not normal,
abnormal. Atypical is often used to refer to
the appearance of precancerous or cancerous
cells.
Or from Websters
Main Entry: atyp·i·cal
Pronunciation: \(?)?-?ti-pi-k?l\
Function: adjective
Date: 1885
:not typical : irregular, unusual

I wasn't diagnosed with CF until I was 21 beacause I had atypical symptoms; not because I had atypical CF. Like Amy said CF is CF, and although back when I was younger my symptoms were considered atypical; now a days, it is more common than not.
(At least thats how I always looked at it)

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 7, 2008

I looked up atypical and the "medical" meaning listed is:
 Atypical: Not typical, not usual, not normal,
 abnormal. Atypical is often used to refer to
 the appearance of precancerous or cancerous
 cells.
 Or from Websters
 Main Entry: atyp·i·cal
 Pronunciation: \(?)?-?ti-pi-k?l\
 Function: adjective
 Date: 1885
 :not typical : irregular, unusual
 
 I wasn't diagnosed with CF until I was 21 beacause I had atypical symptoms; not because I had atypical CF. Like Amy said CF is CF, and although back when I was younger my symptoms were considered atypical; now a days, it is more common than not.
 (At least thats how I always looked at it)
 
 <img src="i/expressions/rose.gif" border="0">

Juliet · Jun 7, 2008