What is atypical cf?

[hmw]

After reading the later replies on this thread and mention of the insurance issues, it really bothers me and convinces me that, similar to other posts, the ONLY ones that stand to benefit in the long run to the 'atypical' and other such labels are the insurance companies.

These labels certainly haven't helped all the people here who saw, in the long run, the inevitable progression that this disease caused and who weren't taken seriously by doctors who saw it in their charts.

Many of us have enough trouble as it is getting necessary treatment covered thanks to insurance companies trying to play God (or at the very least, a suit with NO medical degree trying to play doctor); imagine the field day they could start having denying us/our children care at cf centers, vests, medications, etc based simply on what mutations they have or what they will deem to be 'too mild a condition to treat as CF.' Be careful what you wish for, indeed!

Let us all hope such a thing NEVER comes to pass!

 

[hmw]

After reading the later replies on this thread and mention of the insurance issues, it really bothers me and convinces me that, similar to other posts, the ONLY ones that stand to benefit in the long run to the 'atypical' and other such labels are the insurance companies.

These labels certainly haven't helped all the people here who saw, in the long run, the inevitable progression that this disease caused and who weren't taken seriously by doctors who saw it in their charts.

Many of us have enough trouble as it is getting necessary treatment covered thanks to insurance companies trying to play God (or at the very least, a suit with NO medical degree trying to play doctor); imagine the field day they could start having denying us/our children care at cf centers, vests, medications, etc based simply on what mutations they have or what they will deem to be 'too mild a condition to treat as CF.' Be careful what you wish for, indeed!

Let us all hope such a thing NEVER comes to pass!

 

[hmw]

After reading the later replies on this thread and mention of the insurance issues, it really bothers me and convinces me that, similar to other posts, the ONLY ones that stand to benefit in the long run to the 'atypical' and other such labels are the insurance companies.

These labels certainly haven't helped all the people here who saw, in the long run, the inevitable progression that this disease caused and who weren't taken seriously by doctors who saw it in their charts.

Many of us have enough trouble as it is getting necessary treatment covered thanks to insurance companies trying to play God (or at the very least, a suit with NO medical degree trying to play doctor); imagine the field day they could start having denying us/our children care at cf centers, vests, medications, etc based simply on what mutations they have or what they will deem to be 'too mild a condition to treat as CF.' Be careful what you wish for, indeed!

Let us all hope such a thing NEVER comes to pass!

 

[hmw]

After reading the later replies on this thread and mention of the insurance issues, it really bothers me and convinces me that, similar to other posts, the ONLY ones that stand to benefit in the long run to the 'atypical' and other such labels are the insurance companies.

These labels certainly haven't helped all the people here who saw, in the long run, the inevitable progression that this disease caused and who weren't taken seriously by doctors who saw it in their charts.

Many of us have enough trouble as it is getting necessary treatment covered thanks to insurance companies trying to play God (or at the very least, a suit with NO medical degree trying to play doctor); imagine the field day they could start having denying us/our children care at cf centers, vests, medications, etc based simply on what mutations they have or what they will deem to be 'too mild a condition to treat as CF.' Be careful what you wish for, indeed!

Let us all hope such a thing NEVER comes to pass!

 

[hmw]

After reading the later replies on this thread and mention of the insurance issues, it really bothers me and convinces me that, similar to other posts, the ONLY ones that stand to benefit in the long run to the 'atypical' and other such labels are the insurance companies.
<br />
<br />These labels certainly haven't helped all the people here who saw, in the long run, the inevitable progression that this disease caused and who weren't taken seriously by doctors who saw it in their charts.
<br />
<br />Many of us have enough trouble as it is getting necessary treatment covered thanks to insurance companies trying to play God (or at the very least, a suit with NO medical degree trying to play doctor); imagine the field day they could start having denying us/our children care at cf centers, vests, medications, etc based simply on what mutations they have or what they will deem to be 'too mild a condition to treat as CF.' Be careful what you wish for, indeed!
<br />
<br />Let us all hope such a thing NEVER comes to pass!

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.

</end quote></div>

Just another example of how docs cannot predict how CF will go based on genes or even phenotype.

This is such an irresponsible, harmful practice by these physicians

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.

</end quote></div>

Just another example of how docs cannot predict how CF will go based on genes or even phenotype.

This is such an irresponsible, harmful practice by these physicians

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.

</end quote></div>

Just another example of how docs cannot predict how CF will go based on genes or even phenotype.

This is such an irresponsible, harmful practice by these physicians

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.

</end quote>

Just another example of how docs cannot predict how CF will go based on genes or even phenotype.

This is such an irresponsible, harmful practice by these physicians

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>
<br />
<br />he has atypical or so they told us ..but in the end was determined to be a severe form of CF.
<br />
<br /></end quote>
<br />
<br />Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
<br />
<br />This is such an irresponsible, harmful practice by these physicians

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.</end quote></div>
Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
This is such an irresponsible, harmful practice by these physicians</end quote></div>
I could not agree more.

What a tragedy. <img src="i/expressions/brokenheart.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.</end quote></div>
Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
This is such an irresponsible, harmful practice by these physicians</end quote></div>
I could not agree more.

What a tragedy. <img src="i/expressions/brokenheart.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.</end quote></div>
Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
This is such an irresponsible, harmful practice by these physicians</end quote></div>
I could not agree more.

What a tragedy. <img src="i/expressions/brokenheart.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>

he has atypical or so they told us ..but in the end was determined to be a severe form of CF.</end quote>
Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
This is such an irresponsible, harmful practice by these physicians</end quote>
I could not agree more.

What a tragedy. <img src="i/expressions/brokenheart.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2my3kids</b></i>
<br />
<br />he has atypical or so they told us ..but in the end was determined to be a severe form of CF.</end quote>
<br />Just another example of how docs cannot predict how CF will go based on genes or even phenotype.
<br />This is such an irresponsible, harmful practice by these physicians</end quote>
<br />I could not agree more.
<br />
<br />What a tragedy. <img src="i/expressions/brokenheart.gif" border="0">

 

[gio126]

so my son was diagnosed with cf in 2009...his sweat tests were at a 7 the 2 times that they were done. they came back the same. we went ahead with the genetic testing and confirmed that he had delta f508 and a rare gene. My son will turn 2 in november. He has full pancreatic sufficiency if anything he's pretty heavy for his age. The doctors have told me that he doesn't present with typical cf symptoms because he's never had any...he's never even had a cold...thank god...but my doctor also let me in on some information that even though i have the severe gene delta f508. My boyfriend has a rare 1 that they've never seen before which in the way that the doctor explained in order for a child not to present with the typical cf symptoms the cftr has to work at least 10% if the doctor knows that a child has a rare mutation and doesn't have typical cf it may in fact be because one of the mutations may be working. yes they are faulty genes but i've done research and spken to doctors which clarified that if the cftr which regulates mucus, sweat works at about 10 % thats all you really need in order to prevent the excessive mucus from going into your lungs and reproductive organs.

 

[gio126]

so my son was diagnosed with cf in 2009...his sweat tests were at a 7 the 2 times that they were done. they came back the same. we went ahead with the genetic testing and confirmed that he had delta f508 and a rare gene. My son will turn 2 in november. He has full pancreatic sufficiency if anything he's pretty heavy for his age. The doctors have told me that he doesn't present with typical cf symptoms because he's never had any...he's never even had a cold...thank god...but my doctor also let me in on some information that even though i have the severe gene delta f508. My boyfriend has a rare 1 that they've never seen before which in the way that the doctor explained in order for a child not to present with the typical cf symptoms the cftr has to work at least 10% if the doctor knows that a child has a rare mutation and doesn't have typical cf it may in fact be because one of the mutations may be working. yes they are faulty genes but i've done research and spken to doctors which clarified that if the cftr which regulates mucus, sweat works at about 10 % thats all you really need in order to prevent the excessive mucus from going into your lungs and reproductive organs.

 

[gio126]

so my son was diagnosed with cf in 2009...his sweat tests were at a 7 the 2 times that they were done. they came back the same. we went ahead with the genetic testing and confirmed that he had delta f508 and a rare gene. My son will turn 2 in november. He has full pancreatic sufficiency if anything he's pretty heavy for his age. The doctors have told me that he doesn't present with typical cf symptoms because he's never had any...he's never even had a cold...thank god...but my doctor also let me in on some information that even though i have the severe gene delta f508. My boyfriend has a rare 1 that they've never seen before which in the way that the doctor explained in order for a child not to present with the typical cf symptoms the cftr has to work at least 10% if the doctor knows that a child has a rare mutation and doesn't have typical cf it may in fact be because one of the mutations may be working. yes they are faulty genes but i've done research and spken to doctors which clarified that if the cftr which regulates mucus, sweat works at about 10 % thats all you really need in order to prevent the excessive mucus from going into your lungs and reproductive organs.

 

[HisAngel]

<span style="color: rgb(153, 0, 102);">@mom2lillian....I do not wish to thow this thread off, but after reading your very interesting post. I noticed in your signature you state the following;<br><br>"CANDIDA Sleuthing raised my FEV 15% now @ 114%"<br><font size="4"><br></font><font style="font-family: times new roman; color: rgb(153, 0, 102);" size="4">Could you message me and tell me more please? Much appreciated.....</font><br>

 

[HisAngel]

<span style="color: rgb(153, 0, 102);">@mom2lillian....I do not wish to thow this thread off, but after reading your very interesting post. I noticed in your signature you state the following;<br><br>"CANDIDA Sleuthing raised my FEV 15% now @ 114%"<br><font size="4"><br></font><font style="font-family: times new roman; color: rgb(153, 0, 102);" size="4">Could you message me and tell me more please? Much appreciated.....</font><br>