Mutation queston

[Ratatosk]

Not to confuse the issue.. Just thinking of someone who has posted before that both both a spouse and ex were carriers, but of different mutations...

So isn't there always the possibility that because you had different fathers, that you and your brother had the potential to carry a different gene -- if he's a carrier. And then what about your brother's wife/partner -- isn't there a chance that if she's a carrier that she too might have a completely different gene.

The only reason I mention this is my MIL drives me nuts because whenever we talk about testing, she tells me that she wants to get tested because then when it comes back clear she can tell her family that they're "safe" because the gene obviously came from my FIL's side of the family. And I try to explain til I'm blue in the face that they could BOTH be carriers and it could just be the luck of the draw...

 

[Ratatosk]

Not to confuse the issue.. Just thinking of someone who has posted before that both both a spouse and ex were carriers, but of different mutations...

So isn't there always the possibility that because you had different fathers, that you and your brother had the potential to carry a different gene -- if he's a carrier. And then what about your brother's wife/partner -- isn't there a chance that if she's a carrier that she too might have a completely different gene.

The only reason I mention this is my MIL drives me nuts because whenever we talk about testing, she tells me that she wants to get tested because then when it comes back clear she can tell her family that they're "safe" because the gene obviously came from my FIL's side of the family. And I try to explain til I'm blue in the face that they could BOTH be carriers and it could just be the luck of the draw...

 

[Ratatosk]

Not to confuse the issue.. Just thinking of someone who has posted before that both both a spouse and ex were carriers, but of different mutations...

So isn't there always the possibility that because you had different fathers, that you and your brother had the potential to carry a different gene -- if he's a carrier. And then what about your brother's wife/partner -- isn't there a chance that if she's a carrier that she too might have a completely different gene.

The only reason I mention this is my MIL drives me nuts because whenever we talk about testing, she tells me that she wants to get tested because then when it comes back clear she can tell her family that they're "safe" because the gene obviously came from my FIL's side of the family. And I try to explain til I'm blue in the face that they could BOTH be carriers and it could just be the luck of the draw...

 

[Ratatosk]

Not to confuse the issue.. Just thinking of someone who has posted before that both both a spouse and ex were carriers, but of different mutations...

So isn't there always the possibility that because you had different fathers, that you and your brother had the potential to carry a different gene -- if he's a carrier. And then what about your brother's wife/partner -- isn't there a chance that if she's a carrier that she too might have a completely different gene.

The only reason I mention this is my MIL drives me nuts because whenever we talk about testing, she tells me that she wants to get tested because then when it comes back clear she can tell her family that they're "safe" because the gene obviously came from my FIL's side of the family. And I try to explain til I'm blue in the face that they could BOTH be carriers and it could just be the luck of the draw...

 

[Ratatosk]

Not to confuse the issue.. Just thinking of someone who has posted before that both both a spouse and ex were carriers, but of different mutations...
<br />
<br />So isn't there always the possibility that because you had different fathers, that you and your brother had the potential to carry a different gene -- if he's a carrier. And then what about your brother's wife/partner -- isn't there a chance that if she's a carrier that she too might have a completely different gene.
<br />
<br />The only reason I mention this is my MIL drives me nuts because whenever we talk about testing, she tells me that she wants to get tested because then when it comes back clear she can tell her family that they're "safe" because the gene obviously came from my FIL's side of the family. And I try to explain til I'm blue in the face that they could BOTH be carriers and it could just be the luck of the draw...

 

[holmfamily1992]

They did test my husband and I and when I asked our care center about me having CF due to the fact that I am the carrier of the actual mutation, they told me that I would actually have to have a sweat test done to determine if I have CF or not. I am 35 years old and not sure if I want to know. What I have read on LATE diagnosis isnt good. I asked if Ambry can determine if I have CF just by my blood test I sent in and the CF nurse told me I would need a sweat test. What do you guys think?

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

They did test my husband and I and when I asked our care center about me having CF due to the fact that I am the carrier of the actual mutation, they told me that I would actually have to have a sweat test done to determine if I have CF or not. I am 35 years old and not sure if I want to know. What I have read on LATE diagnosis isnt good. I asked if Ambry can determine if I have CF just by my blood test I sent in and the CF nurse told me I would need a sweat test. What do you guys think?

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

They did test my husband and I and when I asked our care center about me having CF due to the fact that I am the carrier of the actual mutation, they told me that I would actually have to have a sweat test done to determine if I have CF or not. I am 35 years old and not sure if I want to know. What I have read on LATE diagnosis isnt good. I asked if Ambry can determine if I have CF just by my blood test I sent in and the CF nurse told me I would need a sweat test. What do you guys think?

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

They did test my husband and I and when I asked our care center about me having CF due to the fact that I am the carrier of the actual mutation, they told me that I would actually have to have a sweat test done to determine if I have CF or not. I am 35 years old and not sure if I want to know. What I have read on LATE diagnosis isnt good. I asked if Ambry can determine if I have CF just by my blood test I sent in and the CF nurse told me I would need a sweat test. What do you guys think?

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

They did test my husband and I and when I asked our care center about me having CF due to the fact that I am the carrier of the actual mutation, they told me that I would actually have to have a sweat test done to determine if I have CF or not. I am 35 years old and not sure if I want to know. What I have read on LATE diagnosis isnt good. I asked if Ambry can determine if I have CF just by my blood test I sent in and the CF nurse told me I would need a sweat test. What do you guys think?
<br />
<br />Tina
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

I completely agree on having more genes when different sets of parents are involved. I asked my brother and sister to be tested first. Just to determine where it came from and so we can notify the rest of the family. If they have the same mutation, we can almost bet that it came from our moms side. I am the only child with a different dad so that can narrow it down a little.

My brothers little girl has had medical problems all her life. The stomach problems they are calling allergies. Just doing my researh I think its more. We are praying its not.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

I completely agree on having more genes when different sets of parents are involved. I asked my brother and sister to be tested first. Just to determine where it came from and so we can notify the rest of the family. If they have the same mutation, we can almost bet that it came from our moms side. I am the only child with a different dad so that can narrow it down a little.

My brothers little girl has had medical problems all her life. The stomach problems they are calling allergies. Just doing my researh I think its more. We are praying its not.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

I completely agree on having more genes when different sets of parents are involved. I asked my brother and sister to be tested first. Just to determine where it came from and so we can notify the rest of the family. If they have the same mutation, we can almost bet that it came from our moms side. I am the only child with a different dad so that can narrow it down a little.

My brothers little girl has had medical problems all her life. The stomach problems they are calling allergies. Just doing my researh I think its more. We are praying its not.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

I completely agree on having more genes when different sets of parents are involved. I asked my brother and sister to be tested first. Just to determine where it came from and so we can notify the rest of the family. If they have the same mutation, we can almost bet that it came from our moms side. I am the only child with a different dad so that can narrow it down a little.

My brothers little girl has had medical problems all her life. The stomach problems they are calling allergies. Just doing my researh I think its more. We are praying its not.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

I completely agree on having more genes when different sets of parents are involved. I asked my brother and sister to be tested first. Just to determine where it came from and so we can notify the rest of the family. If they have the same mutation, we can almost bet that it came from our moms side. I am the only child with a different dad so that can narrow it down a little.
<br />
<br />My brothers little girl has had medical problems all her life. The stomach problems they are calling allergies. Just doing my researh I think its more. We are praying its not.
<br />
<br />Tina
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[Alyssa]

The best way to figure out if you have CF would be to do full genetic testing. A sweat test is only helpful if you do indeed test out very high -- often times, when someone is a late diagnosis it is because their symptoms have been somewhat mild and with that often times comes a normal or borderline sweat test result number.

I do not agree with the nurse that told you the only way to know is to get a sweat test done -- if it's high, yes, you would know, but it might just confuse the issue if it is a high normal or borderline.

As far as not wanting to know...I guess that is your privilege, but you are not doing yourself any favors (health wise) by not finding out and getting treatment -- you will live a longer, healthier life if you were to get treatments and checkups on a regular basis.

Please refresh my memory ... what are the gene mutations your child has? What are the symptoms that you have?

 

[Alyssa]

The best way to figure out if you have CF would be to do full genetic testing. A sweat test is only helpful if you do indeed test out very high -- often times, when someone is a late diagnosis it is because their symptoms have been somewhat mild and with that often times comes a normal or borderline sweat test result number.

I do not agree with the nurse that told you the only way to know is to get a sweat test done -- if it's high, yes, you would know, but it might just confuse the issue if it is a high normal or borderline.

As far as not wanting to know...I guess that is your privilege, but you are not doing yourself any favors (health wise) by not finding out and getting treatment -- you will live a longer, healthier life if you were to get treatments and checkups on a regular basis.

Please refresh my memory ... what are the gene mutations your child has? What are the symptoms that you have?

 

[Alyssa]

The best way to figure out if you have CF would be to do full genetic testing. A sweat test is only helpful if you do indeed test out very high -- often times, when someone is a late diagnosis it is because their symptoms have been somewhat mild and with that often times comes a normal or borderline sweat test result number.

I do not agree with the nurse that told you the only way to know is to get a sweat test done -- if it's high, yes, you would know, but it might just confuse the issue if it is a high normal or borderline.

As far as not wanting to know...I guess that is your privilege, but you are not doing yourself any favors (health wise) by not finding out and getting treatment -- you will live a longer, healthier life if you were to get treatments and checkups on a regular basis.

Please refresh my memory ... what are the gene mutations your child has? What are the symptoms that you have?

 

[Alyssa]

The best way to figure out if you have CF would be to do full genetic testing. A sweat test is only helpful if you do indeed test out very high -- often times, when someone is a late diagnosis it is because their symptoms have been somewhat mild and with that often times comes a normal or borderline sweat test result number.

I do not agree with the nurse that told you the only way to know is to get a sweat test done -- if it's high, yes, you would know, but it might just confuse the issue if it is a high normal or borderline.

As far as not wanting to know...I guess that is your privilege, but you are not doing yourself any favors (health wise) by not finding out and getting treatment -- you will live a longer, healthier life if you were to get treatments and checkups on a regular basis.

Please refresh my memory ... what are the gene mutations your child has? What are the symptoms that you have?

 

[Alyssa]

The best way to figure out if you have CF would be to do full genetic testing. A sweat test is only helpful if you do indeed test out very high -- often times, when someone is a late diagnosis it is because their symptoms have been somewhat mild and with that often times comes a normal or borderline sweat test result number.
<br />
<br />I do not agree with the nurse that told you the only way to know is to get a sweat test done -- if it's high, yes, you would know, but it might just confuse the issue if it is a high normal or borderline.
<br />
<br />As far as not wanting to know...I guess that is your privilege, but you are not doing yourself any favors (health wise) by not finding out and getting treatment -- you will live a longer, healthier life if you were to get treatments and checkups on a regular basis.
<br />
<br />Please refresh my memory ... what are the gene mutations your child has? What are the symptoms that you have?