Mild CF?

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flatfordl

New member
My daughters mutations are double delta f508.

Thanks for your replies.

I know it is a touchy subject and I too believe that we won't know until she is way older what type of CF she has and that is why we are treating her like she has a typical case of CF (if there is such a thing)!!
 
F

flatfordl

New member
My daughters mutations are double delta f508.

Thanks for your replies.

I know it is a touchy subject and I too believe that we won't know until she is way older what type of CF she has and that is why we are treating her like she has a typical case of CF (if there is such a thing)!!
 
F

flatfordl

New member
My daughters mutations are double delta f508.

Thanks for your replies.

I know it is a touchy subject and I too believe that we won't know until she is way older what type of CF she has and that is why we are treating her like she has a typical case of CF (if there is such a thing)!!
 
F

flatfordl

New member
My daughters mutations are double delta f508.

Thanks for your replies.

I know it is a touchy subject and I too believe that we won't know until she is way older what type of CF she has and that is why we are treating her like she has a typical case of CF (if there is such a thing)!!
 
F

flatfordl

New member
My daughters mutations are double delta f508.
<br />
<br />Thanks for your replies.
<br />
<br /> I know it is a touchy subject and I too believe that we won't know until she is way older what type of CF she has and that is why we are treating her like she has a typical case of CF (if there is such a thing)!!
<br />
<br />
<br />
 
J

just1more

New member
For what it is worth, while she is not symptomatic currently, DDF508 is 'classic' CF, and while there are exceptions you are definately right in treating it as such.

Just be thankful for the small miracle that she is healthy and doing well.
 
J

just1more

New member
For what it is worth, while she is not symptomatic currently, DDF508 is 'classic' CF, and while there are exceptions you are definately right in treating it as such.

Just be thankful for the small miracle that she is healthy and doing well.
 
J

just1more

New member
For what it is worth, while she is not symptomatic currently, DDF508 is 'classic' CF, and while there are exceptions you are definately right in treating it as such.

Just be thankful for the small miracle that she is healthy and doing well.
 
J

just1more

New member
For what it is worth, while she is not symptomatic currently, DDF508 is 'classic' CF, and while there are exceptions you are definately right in treating it as such.

Just be thankful for the small miracle that she is healthy and doing well.
 
J

just1more

New member
For what it is worth, while she is not symptomatic currently, DDF508 is 'classic' CF, and while there are exceptions you are definately right in treating it as such.
<br />
<br />Just be thankful for the small miracle that she is healthy and doing well.
 
B

Buckeye

New member
I do believe some mutations cause people to have a later onset of typical CF problems, but I'm not sure I would call it mild - maybe just delayed.I'm sort of with Paula on this one though, what is mild? I think mild to one parent is not mild to another. There was a post on the adult section a few months ago where people were discussing if they viewed themselves as mild, moderate or severe and there was a big difference in how people with approximately the same Fev1 viewed themselves.
 
B

Buckeye

New member
I do believe some mutations cause people to have a later onset of typical CF problems, but I'm not sure I would call it mild - maybe just delayed.I'm sort of with Paula on this one though, what is mild? I think mild to one parent is not mild to another. There was a post on the adult section a few months ago where people were discussing if they viewed themselves as mild, moderate or severe and there was a big difference in how people with approximately the same Fev1 viewed themselves.
 
B

Buckeye

New member
I do believe some mutations cause people to have a later onset of typical CF problems, but I'm not sure I would call it mild - maybe just delayed.I'm sort of with Paula on this one though, what is mild? I think mild to one parent is not mild to another. There was a post on the adult section a few months ago where people were discussing if they viewed themselves as mild, moderate or severe and there was a big difference in how people with approximately the same Fev1 viewed themselves.
 
B

Buckeye

New member
I do believe some mutations cause people to have a later onset of typical CF problems, but I'm not sure I would call it mild - maybe just delayed.I'm sort of with Paula on this one though, what is mild? I think mild to one parent is not mild to another. There was a post on the adult section a few months ago where people were discussing if they viewed themselves as mild, moderate or severe and there was a big difference in how people with approximately the same Fev1 viewed themselves.
 
B

Buckeye

New member
I do believe some mutations cause people to have a later onset of typical CF problems, but I'm not sure I would call it mild - maybe just delayed.<p>I'm sort of with Paula on this one though, what is mild? I think mild to one parent is not mild to another. There was a post on the adult section a few months ago where people were discussing if they viewed themselves as mild, moderate or severe and there was a big difference in how people with approximately the same Fev1 viewed themselves.
 
M

Mommafirst

Guest
Well I'll weigh in on this a bit. My daughter has one class one typical gene (w1282x) and one that is so rare (ambry says 6 others and only one of them was pancreatic insufficient) that we really couldn't guess even if genes mattered in the way it all plays out.

I think it is possible to have milder CF or a slower progressing CF, but I think as a parent (and possibly also a patient-- but I don't know personally) that mentally its probably better to hold on to a hope for a milder progression, while living with an acceptance of CF is CF.

In Alyssa's earliest CF days we were told that her mutations would most likely produce a less typical progression, but that they really didn't know. Medicine is not an exact science really. Lots of guesses and estimates involved. Alyssa is almost three and is doing incredibly well. Bronch shows no lung involvement, and yet she still cultures staph that is a tricky bugger when she gets sick. Twice already we've had to do tune-ups because her staph doesn't respond well to oral abx.

So, to me, her mild CF is a silly tag that just sets me up for dissappointment.

I hope that AVery (and lots of other kids around here) get to live the life of a mild CFer, but I do think that the tag can do more mental harm than good. (((HUGS)))
 
M

Mommafirst

Guest
Well I'll weigh in on this a bit. My daughter has one class one typical gene (w1282x) and one that is so rare (ambry says 6 others and only one of them was pancreatic insufficient) that we really couldn't guess even if genes mattered in the way it all plays out.

I think it is possible to have milder CF or a slower progressing CF, but I think as a parent (and possibly also a patient-- but I don't know personally) that mentally its probably better to hold on to a hope for a milder progression, while living with an acceptance of CF is CF.

In Alyssa's earliest CF days we were told that her mutations would most likely produce a less typical progression, but that they really didn't know. Medicine is not an exact science really. Lots of guesses and estimates involved. Alyssa is almost three and is doing incredibly well. Bronch shows no lung involvement, and yet she still cultures staph that is a tricky bugger when she gets sick. Twice already we've had to do tune-ups because her staph doesn't respond well to oral abx.

So, to me, her mild CF is a silly tag that just sets me up for dissappointment.

I hope that AVery (and lots of other kids around here) get to live the life of a mild CFer, but I do think that the tag can do more mental harm than good. (((HUGS)))
 
M

Mommafirst

Guest
Well I'll weigh in on this a bit. My daughter has one class one typical gene (w1282x) and one that is so rare (ambry says 6 others and only one of them was pancreatic insufficient) that we really couldn't guess even if genes mattered in the way it all plays out.

I think it is possible to have milder CF or a slower progressing CF, but I think as a parent (and possibly also a patient-- but I don't know personally) that mentally its probably better to hold on to a hope for a milder progression, while living with an acceptance of CF is CF.

In Alyssa's earliest CF days we were told that her mutations would most likely produce a less typical progression, but that they really didn't know. Medicine is not an exact science really. Lots of guesses and estimates involved. Alyssa is almost three and is doing incredibly well. Bronch shows no lung involvement, and yet she still cultures staph that is a tricky bugger when she gets sick. Twice already we've had to do tune-ups because her staph doesn't respond well to oral abx.

So, to me, her mild CF is a silly tag that just sets me up for dissappointment.

I hope that AVery (and lots of other kids around here) get to live the life of a mild CFer, but I do think that the tag can do more mental harm than good. (((HUGS)))
 
M

Mommafirst

Guest
Well I'll weigh in on this a bit. My daughter has one class one typical gene (w1282x) and one that is so rare (ambry says 6 others and only one of them was pancreatic insufficient) that we really couldn't guess even if genes mattered in the way it all plays out.

I think it is possible to have milder CF or a slower progressing CF, but I think as a parent (and possibly also a patient-- but I don't know personally) that mentally its probably better to hold on to a hope for a milder progression, while living with an acceptance of CF is CF.

In Alyssa's earliest CF days we were told that her mutations would most likely produce a less typical progression, but that they really didn't know. Medicine is not an exact science really. Lots of guesses and estimates involved. Alyssa is almost three and is doing incredibly well. Bronch shows no lung involvement, and yet she still cultures staph that is a tricky bugger when she gets sick. Twice already we've had to do tune-ups because her staph doesn't respond well to oral abx.

So, to me, her mild CF is a silly tag that just sets me up for dissappointment.

I hope that AVery (and lots of other kids around here) get to live the life of a mild CFer, but I do think that the tag can do more mental harm than good. (((HUGS)))
 
M

Mommafirst

Guest
Well I'll weigh in on this a bit. My daughter has one class one typical gene (w1282x) and one that is so rare (ambry says 6 others and only one of them was pancreatic insufficient) that we really couldn't guess even if genes mattered in the way it all plays out.
<br />
<br />I think it is possible to have milder CF or a slower progressing CF, but I think as a parent (and possibly also a patient-- but I don't know personally) that mentally its probably better to hold on to a hope for a milder progression, while living with an acceptance of CF is CF.
<br />
<br />In Alyssa's earliest CF days we were told that her mutations would most likely produce a less typical progression, but that they really didn't know. Medicine is not an exact science really. Lots of guesses and estimates involved. Alyssa is almost three and is doing incredibly well. Bronch shows no lung involvement, and yet she still cultures staph that is a tricky bugger when she gets sick. Twice already we've had to do tune-ups because her staph doesn't respond well to oral abx.
<br />
<br />So, to me, her mild CF is a silly tag that just sets me up for dissappointment.
<br />
<br />I hope that AVery (and lots of other kids around here) get to live the life of a mild CFer, but I do think that the tag can do more mental harm than good. (((HUGS)))
 
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