I have a Question........

princessjdc

New member
I hope this all makes sense, bare with me

Okay, my sis and her husband are both carriers and she wants another baby, she already has one cf free, thank goodnees. She doesnt want another one incase the baby gets CF so she is thinking of adopting.

She said that she is getting the test results of both of them to see what their carrier mutation is. She says that if its not a bad mutation then she might go ahead and have another child. Thinking that if their mutations or good mutations then the child wont have bad CF.

I told her that it doesnt matter what kind of mutation it is, because every person is different with the disease, some may have it bad and others may not even if they both had the exact mutations, CF effects people differently no matter what the mutation is. If she was to have a baby with CF that kid will still need to do treatments and etc. even if they are healthy and I dont think she quite understands it completely.

so was I correct in telling her that it doesnt matter what the mutation is, whether its classified as a good mutation or not the kid can still have severe CF?

I remember a chart on here one time talking about the difference in mutations and whats classified under, and mine was something like moderate or like a bad mutation, but Im doing good with my cf right now, infact Im mild I think is what its called. Thats why I told my sis that it doesnt matter, if the mutation is good or not, based on my experience with my mutation and according to that chart.

Thank you so much for your response on this!!!
 

princessjdc

New member
I hope this all makes sense, bare with me

Okay, my sis and her husband are both carriers and she wants another baby, she already has one cf free, thank goodnees. She doesnt want another one incase the baby gets CF so she is thinking of adopting.

She said that she is getting the test results of both of them to see what their carrier mutation is. She says that if its not a bad mutation then she might go ahead and have another child. Thinking that if their mutations or good mutations then the child wont have bad CF.

I told her that it doesnt matter what kind of mutation it is, because every person is different with the disease, some may have it bad and others may not even if they both had the exact mutations, CF effects people differently no matter what the mutation is. If she was to have a baby with CF that kid will still need to do treatments and etc. even if they are healthy and I dont think she quite understands it completely.

so was I correct in telling her that it doesnt matter what the mutation is, whether its classified as a good mutation or not the kid can still have severe CF?

I remember a chart on here one time talking about the difference in mutations and whats classified under, and mine was something like moderate or like a bad mutation, but Im doing good with my cf right now, infact Im mild I think is what its called. Thats why I told my sis that it doesnt matter, if the mutation is good or not, based on my experience with my mutation and according to that chart.

Thank you so much for your response on this!!!
 

princessjdc

New member
I hope this all makes sense, bare with me

Okay, my sis and her husband are both carriers and she wants another baby, she already has one cf free, thank goodnees. She doesnt want another one incase the baby gets CF so she is thinking of adopting.

She said that she is getting the test results of both of them to see what their carrier mutation is. She says that if its not a bad mutation then she might go ahead and have another child. Thinking that if their mutations or good mutations then the child wont have bad CF.

I told her that it doesnt matter what kind of mutation it is, because every person is different with the disease, some may have it bad and others may not even if they both had the exact mutations, CF effects people differently no matter what the mutation is. If she was to have a baby with CF that kid will still need to do treatments and etc. even if they are healthy and I dont think she quite understands it completely.

so was I correct in telling her that it doesnt matter what the mutation is, whether its classified as a good mutation or not the kid can still have severe CF?

I remember a chart on here one time talking about the difference in mutations and whats classified under, and mine was something like moderate or like a bad mutation, but Im doing good with my cf right now, infact Im mild I think is what its called. Thats why I told my sis that it doesnt matter, if the mutation is good or not, based on my experience with my mutation and according to that chart.

Thank you so much for your response on this!!!
 

JazzysMom

New member
You are 1000000000000000% correct. For her to think that the mutation will dictate things especially JUST that is totally ridiculous. CF is progressive as we all know. That part doesnt change with the mutation.
 

JazzysMom

New member
You are 1000000000000000% correct. For her to think that the mutation will dictate things especially JUST that is totally ridiculous. CF is progressive as we all know. That part doesnt change with the mutation.
 

JazzysMom

New member
You are 1000000000000000% correct. For her to think that the mutation will dictate things especially JUST that is totally ridiculous. CF is progressive as we all know. That part doesnt change with the mutation.
 

Landy

New member
You are correct.
In my opinion, what infections you encounter/harbor dictate the severtiy of CF (from a lung stand-point, obviously) more then what mutation you have.
 

Landy

New member
You are correct.
In my opinion, what infections you encounter/harbor dictate the severtiy of CF (from a lung stand-point, obviously) more then what mutation you have.
 

Landy

New member
You are correct.
In my opinion, what infections you encounter/harbor dictate the severtiy of CF (from a lung stand-point, obviously) more then what mutation you have.
 

lightNlife

New member
I am encouraging the adoption route. Mutations, although a reasonable indicator of severity disease are NO GUARANTEE or predictor of what's to come. There are always major risks of infection. Someone with mild CF can go from 100% to dead in a matter of weeks if they get hit by cepacia syndrome.

The whole concept of a "good mutation" just irks my tater. Did you see the movie "The Princess Bride" (or read the book); remember the part about him being "mostly dead" as opposed to "completely dead." How silly was that concept? The idea of a good mutation is the same thing in my mind.

As Mel said, CF is progressive. And there also happens to be NO CURE. Hours upon hours of treatments for MAYBE a better life expectancy. But even being as diligent as we can, there is no guarantee. CF is terminal.
 

lightNlife

New member
I am encouraging the adoption route. Mutations, although a reasonable indicator of severity disease are NO GUARANTEE or predictor of what's to come. There are always major risks of infection. Someone with mild CF can go from 100% to dead in a matter of weeks if they get hit by cepacia syndrome.

The whole concept of a "good mutation" just irks my tater. Did you see the movie "The Princess Bride" (or read the book); remember the part about him being "mostly dead" as opposed to "completely dead." How silly was that concept? The idea of a good mutation is the same thing in my mind.

As Mel said, CF is progressive. And there also happens to be NO CURE. Hours upon hours of treatments for MAYBE a better life expectancy. But even being as diligent as we can, there is no guarantee. CF is terminal.
 

lightNlife

New member
I am encouraging the adoption route. Mutations, although a reasonable indicator of severity disease are NO GUARANTEE or predictor of what's to come. There are always major risks of infection. Someone with mild CF can go from 100% to dead in a matter of weeks if they get hit by cepacia syndrome.

The whole concept of a "good mutation" just irks my tater. Did you see the movie "The Princess Bride" (or read the book); remember the part about him being "mostly dead" as opposed to "completely dead." How silly was that concept? The idea of a good mutation is the same thing in my mind.

As Mel said, CF is progressive. And there also happens to be NO CURE. Hours upon hours of treatments for MAYBE a better life expectancy. But even being as diligent as we can, there is no guarantee. CF is terminal.
 

princessjdc

New member
Lynda - I also agree that infections play a big role in a Person with CF, depending on what infections you get depends on your life span .

Chris- What is IVF/PGD?

LightNlife- I never seen or read that book The Princess Bride but I get what your saying about it.

Thank you guys, I figured i would be right but I just had to make sure and get other opinions, I know sometimes I can get information mixed up.
 

princessjdc

New member
Lynda - I also agree that infections play a big role in a Person with CF, depending on what infections you get depends on your life span .

Chris- What is IVF/PGD?

LightNlife- I never seen or read that book The Princess Bride but I get what your saying about it.

Thank you guys, I figured i would be right but I just had to make sure and get other opinions, I know sometimes I can get information mixed up.
 

princessjdc

New member
Lynda - I also agree that infections play a big role in a Person with CF, depending on what infections you get depends on your life span .

Chris- What is IVF/PGD?

LightNlife- I never seen or read that book The Princess Bride but I get what your saying about it.

Thank you guys, I figured i would be right but I just had to make sure and get other opinions, I know sometimes I can get information mixed up.
 

Chaggie

New member
IVF/PGD is Ivitro fertilization with preimpantation genetic diagnosis. They cand test the empbryos befor they are implanted to determine CF. Here's a link

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ivf-infertility.com/ivf/pgd.php">http://www.ivf-infertility.com/ivf/pgd.php</a>
 

Chaggie

New member
IVF/PGD is Ivitro fertilization with preimpantation genetic diagnosis. They cand test the empbryos befor they are implanted to determine CF. Here's a link

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ivf-infertility.com/ivf/pgd.php">http://www.ivf-infertility.com/ivf/pgd.php</a>
 
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