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Is Atypical CF really all that uncommon?

E

ERINSBIZ

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

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></end quote></div>



This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div>
 
E

ERINSBIZ

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

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></end quote></div>



This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div>
 
E

ERINSBIZ

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

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></end quote></div>



This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div>
 
E

ERINSBIZ

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

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></end quote>



This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote>
 
E

ERINSBIZ

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
<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></end quote>
<br />
<br />
<br />
<br />This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote>
<br />
<br />
 
E

ERINSBIZ

New member
Whoops, I am learning how to use the quote thing and I messed up.

But anyhow, this is so interesting because I have had CF all my life and have known about the fact I have it all my life. I always had the digestive issue so I just always took my enzymes and I was status quo as a healthy cfer with only annual visits. Great, I always told people I have a mild case. I laugh now and think how ignorant; although, I didn't know at the time things would eventually go in another direction. I had been told it could go into my lungs, but I had the invincible mentality and elites form of attitude that I was not like all the other cfers. Sorry, but when you have not been hospitalized you feel like your not severe. Now that I hit my thirties, guess what, I am no longer mild. So I agree with Bittyhorse. It just gave me a reason to ignore cf.

I have wised up though; thanks to all of you sharing, because my son has CF but with no symptoms at all. Whew, I thought he was cleared and I was non-compliant with dr. who actually wants to see him every 3-4months. I decided once a year visit would be suffice and the acapella forget about that he doesn't have any issues in his lungs.

After this hospital visit and being on iv for 4 weeks and the fact I am not at my 100% game really has made me reevaluate my own health and my sons; I cannot ignore this disease any longer.
 
E

ERINSBIZ

New member
Whoops, I am learning how to use the quote thing and I messed up.

But anyhow, this is so interesting because I have had CF all my life and have known about the fact I have it all my life. I always had the digestive issue so I just always took my enzymes and I was status quo as a healthy cfer with only annual visits. Great, I always told people I have a mild case. I laugh now and think how ignorant; although, I didn't know at the time things would eventually go in another direction. I had been told it could go into my lungs, but I had the invincible mentality and elites form of attitude that I was not like all the other cfers. Sorry, but when you have not been hospitalized you feel like your not severe. Now that I hit my thirties, guess what, I am no longer mild. So I agree with Bittyhorse. It just gave me a reason to ignore cf.

I have wised up though; thanks to all of you sharing, because my son has CF but with no symptoms at all. Whew, I thought he was cleared and I was non-compliant with dr. who actually wants to see him every 3-4months. I decided once a year visit would be suffice and the acapella forget about that he doesn't have any issues in his lungs.

After this hospital visit and being on iv for 4 weeks and the fact I am not at my 100% game really has made me reevaluate my own health and my sons; I cannot ignore this disease any longer.
 
E

ERINSBIZ

New member
Whoops, I am learning how to use the quote thing and I messed up.

But anyhow, this is so interesting because I have had CF all my life and have known about the fact I have it all my life. I always had the digestive issue so I just always took my enzymes and I was status quo as a healthy cfer with only annual visits. Great, I always told people I have a mild case. I laugh now and think how ignorant; although, I didn't know at the time things would eventually go in another direction. I had been told it could go into my lungs, but I had the invincible mentality and elites form of attitude that I was not like all the other cfers. Sorry, but when you have not been hospitalized you feel like your not severe. Now that I hit my thirties, guess what, I am no longer mild. So I agree with Bittyhorse. It just gave me a reason to ignore cf.

I have wised up though; thanks to all of you sharing, because my son has CF but with no symptoms at all. Whew, I thought he was cleared and I was non-compliant with dr. who actually wants to see him every 3-4months. I decided once a year visit would be suffice and the acapella forget about that he doesn't have any issues in his lungs.

After this hospital visit and being on iv for 4 weeks and the fact I am not at my 100% game really has made me reevaluate my own health and my sons; I cannot ignore this disease any longer.
 
E

ERINSBIZ

New member
Whoops, I am learning how to use the quote thing and I messed up.

But anyhow, this is so interesting because I have had CF all my life and have known about the fact I have it all my life. I always had the digestive issue so I just always took my enzymes and I was status quo as a healthy cfer with only annual visits. Great, I always told people I have a mild case. I laugh now and think how ignorant; although, I didn't know at the time things would eventually go in another direction. I had been told it could go into my lungs, but I had the invincible mentality and elites form of attitude that I was not like all the other cfers. Sorry, but when you have not been hospitalized you feel like your not severe. Now that I hit my thirties, guess what, I am no longer mild. So I agree with Bittyhorse. It just gave me a reason to ignore cf.

I have wised up though; thanks to all of you sharing, because my son has CF but with no symptoms at all. Whew, I thought he was cleared and I was non-compliant with dr. who actually wants to see him every 3-4months. I decided once a year visit would be suffice and the acapella forget about that he doesn't have any issues in his lungs.

After this hospital visit and being on iv for 4 weeks and the fact I am not at my 100% game really has made me reevaluate my own health and my sons; I cannot ignore this disease any longer.
 
E

ERINSBIZ

New member
Whoops, I am learning how to use the quote thing and I messed up.
<br />
<br />But anyhow, this is so interesting because I have had CF all my life and have known about the fact I have it all my life. I always had the digestive issue so I just always took my enzymes and I was status quo as a healthy cfer with only annual visits. Great, I always told people I have a mild case. I laugh now and think how ignorant; although, I didn't know at the time things would eventually go in another direction. I had been told it could go into my lungs, but I had the invincible mentality and elites form of attitude that I was not like all the other cfers. Sorry, but when you have not been hospitalized you feel like your not severe. Now that I hit my thirties, guess what, I am no longer mild. So I agree with Bittyhorse. It just gave me a reason to ignore cf.
<br />
<br />I have wised up though; thanks to all of you sharing, because my son has CF but with no symptoms at all. Whew, I thought he was cleared and I was non-compliant with dr. who actually wants to see him every 3-4months. I decided once a year visit would be suffice and the acapella forget about that he doesn't have any issues in his lungs.
<br />
<br />After this hospital visit and being on iv for 4 weeks and the fact I am not at my 100% game really has made me reevaluate my own health and my sons; I cannot ignore this disease any longer.
 
D

dyza

New member
Some new people here, so a small explanation about me. I have double RH117(7T), my son, who is CF has this and DF508. The only reason that they found this in me was because of my sons dx. In Scotland, and a growing list of countries, newborn screening of CF is becoming the norm. So the more babies that are screened will result in more parents being found to be atypical.
I am 41, smoked for 23 years, overweight with 2 kids, not your typical CFer. But then again I dont consider myself as having CF, although I do see a CF doctor once a year now, just as a precautionary measure.

So is everyone CF that has 2 mutations? (Rh117 is class 4)

Craig
 
D

dyza

New member
Some new people here, so a small explanation about me. I have double RH117(7T), my son, who is CF has this and DF508. The only reason that they found this in me was because of my sons dx. In Scotland, and a growing list of countries, newborn screening of CF is becoming the norm. So the more babies that are screened will result in more parents being found to be atypical.
I am 41, smoked for 23 years, overweight with 2 kids, not your typical CFer. But then again I dont consider myself as having CF, although I do see a CF doctor once a year now, just as a precautionary measure.

So is everyone CF that has 2 mutations? (Rh117 is class 4)

Craig
 
D

dyza

New member
Some new people here, so a small explanation about me. I have double RH117(7T), my son, who is CF has this and DF508. The only reason that they found this in me was because of my sons dx. In Scotland, and a growing list of countries, newborn screening of CF is becoming the norm. So the more babies that are screened will result in more parents being found to be atypical.
I am 41, smoked for 23 years, overweight with 2 kids, not your typical CFer. But then again I dont consider myself as having CF, although I do see a CF doctor once a year now, just as a precautionary measure.

So is everyone CF that has 2 mutations? (Rh117 is class 4)

Craig
 
D

dyza

New member
Some new people here, so a small explanation about me. I have double RH117(7T), my son, who is CF has this and DF508. The only reason that they found this in me was because of my sons dx. In Scotland, and a growing list of countries, newborn screening of CF is becoming the norm. So the more babies that are screened will result in more parents being found to be atypical.
I am 41, smoked for 23 years, overweight with 2 kids, not your typical CFer. But then again I dont consider myself as having CF, although I do see a CF doctor once a year now, just as a precautionary measure.

So is everyone CF that has 2 mutations? (Rh117 is class 4)

Craig
 
D

dyza

New member
Some new people here, so a small explanation about me. I have double RH117(7T), my son, who is CF has this and DF508. The only reason that they found this in me was because of my sons dx. In Scotland, and a growing list of countries, newborn screening of CF is becoming the norm. So the more babies that are screened will result in more parents being found to be atypical.
<br />I am 41, smoked for 23 years, overweight with 2 kids, not your typical CFer. But then again I dont consider myself as having CF, although I do see a CF doctor once a year now, just as a precautionary measure.
<br />
<br />So is everyone CF that has 2 mutations? (Rh117 is class 4)
<br />
<br />Craig
 
N

NoExcuses

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

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



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></end quote></div>







This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div></end quote></div>

not sure why this was quote as Skye saying this, but it was my statement <img src="i/expressions/face-icon-small-smile.gif" border="0"> just to clarify....
 
N

NoExcuses

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

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



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></end quote></div>







This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div></end quote></div>

not sure why this was quote as Skye saying this, but it was my statement <img src="i/expressions/face-icon-small-smile.gif" border="0"> just to clarify....
 
N

NoExcuses

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

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



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></end quote></div>







This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></div></end quote></div>

not sure why this was quote as Skye saying this, but it was my statement <img src="i/expressions/face-icon-small-smile.gif" border="0"> just to clarify....
 
N

NoExcuses

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

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



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></end quote>







This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></end quote>

not sure why this was quote as Skye saying this, but it was my statement <img src="i/expressions/face-icon-small-smile.gif" border="0"> just to clarify....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ERINSBIZ</b></i>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
<br />
<br />
<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></end quote>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />This is sooo true....I have had many people in my lifetime ask me if I have "mild" CF. There is not a "mild" CF and to go along in life thinking there is can be a dangerous game to play.</end quote></end quote>
<br />
<br />not sure why this was quote as Skye saying this, but it was my statement <img src="i/expressions/face-icon-small-smile.gif" border="0"> just to clarify....
 
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