Been daydreaming about my son's future...

S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
S

spacemom

New member
... and I wonder:

I've been reading around and you all seem to agree that a CFer will hardly live until retirement. 36 years is the life expectancy.
My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote></div>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote></div>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote></div>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote></div>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
N

NoExcuses

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


My question: is this valid for mild CFers too, or just for those with the delta F508 (the most severe one I think).
</end quote>


Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).

Just wanted to clarify what the term mild means.

Also, please know that your sons genes have little to do with clinical outcome. I'm not sure if you caught the thread where everyone posted who has Double DF508... but that's a perfect example of people who have the exact same two genes have dramatically different lung functions and overall clinical outcome.

So don't hang your hat on predicting the future with your son's genes.... they won't tell you much. Modifier genes will, medication compliance will, the type of CF center you go to will, nutrition will and exercise will. THOSE will be your predictors.

<div class="FTQUOTE"><begin quote>I mean for every class of mutations the expectancy is equal? 36 years for everybody? Or is it an average of all mutations? Is there an average by class? (I fear this is a stupid question) <img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote>

There isn't because genes don't predict how long you'll live. They simply don't.

I'll tell you this though - when I was born (1981) life expectancy was 16-18. I'm 26 now and life expectancy is 36.8 (almost 50 if you go to the Minnesota clinic). So things do change. Slowly, but they do.
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote></div>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote></div>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote></div>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote></div>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
S

spacemom

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

[Two things: "mild" is a term used to categorized FEV1 (lung function). So many of the CFers who are older (late 30s and older) where very mild when they were younger. But since its a progressive disease, and their FEV1 decreased they turned from mild to moderate and some even to severe (but some are still mild).



Just wanted to clarify what the term mild means..</end quote>

Oh this just shows how misinformed I am. Since my son's doctor said he had a mild version of the disease, I thought that was related to the type of genes. So, everybody is mild in the beginning, I see. But what's "the beginning" then? Birth, or first symptoms?

I'll be sure to check the double DF508 thread, I hadn't caught it before. Thank you!

I know my son hasn't the DF508, the cat scans don't show any lung damage, and lung function is 80+% I think. He does have pseudomona colonies.

I really thought some mutations are worse than others.

BTW and you're just 6 older than my son, do you have any hopes that a cure (probably by genetic therapy) is found in the say next 10 years?
 
N

NoExcuses

New member
Being 20 years old and with an FEV1 over 80% is fantastic.

Generally an FEV1 between 75-100% is considered mild.

In terms of hope for a cure in 10 years. I was told when I was 9 in 1990 when the gene was discovered that my CF would be cured by the time I went to college. That was 8 years ago.....

There are some therapies in the pipeline for CF (as we know for every drug that is FDA approved about 10 more are rejected by the FDA or don't make it through safety/efficacy trials). So as long as <b> everyone makes a huge effort to particpate in clinical trials </b> (Dr. Beall of the CF Foundation is extremely worried that not enough CF patients will volunteer for these studies so it will take even longer for drugs to get to CFErs) I think we might have a shot at some good drugs in the next 10 years.

As always, I hope my perspective is wrong. I would be overjoyed if it is. But until now, I remain reserved.
 
N

NoExcuses

New member
Being 20 years old and with an FEV1 over 80% is fantastic.

Generally an FEV1 between 75-100% is considered mild.

In terms of hope for a cure in 10 years. I was told when I was 9 in 1990 when the gene was discovered that my CF would be cured by the time I went to college. That was 8 years ago.....

There are some therapies in the pipeline for CF (as we know for every drug that is FDA approved about 10 more are rejected by the FDA or don't make it through safety/efficacy trials). So as long as <b> everyone makes a huge effort to particpate in clinical trials </b> (Dr. Beall of the CF Foundation is extremely worried that not enough CF patients will volunteer for these studies so it will take even longer for drugs to get to CFErs) I think we might have a shot at some good drugs in the next 10 years.

As always, I hope my perspective is wrong. I would be overjoyed if it is. But until now, I remain reserved.
 
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