CF and twins

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Skye

New member
We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out.

This family wants help and support. They are newly dx'd probably by state mandated newborn screening. They probably have not even seen a CF specialist yet. My BIG concern is that the other twin may also have CF and that the newborn screening has not picked this up. I guess whatever CF center they go to will recommend further testing for the other twin, right??. They didn't mention the other twin at all in regards to CF. Am I right in thinking that they need to investigate further for the other twins sake?
 
S

Skye

New member
We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out.

This family wants help and support. They are newly dx'd probably by state mandated newborn screening. They probably have not even seen a CF specialist yet. My BIG concern is that the other twin may also have CF and that the newborn screening has not picked this up. I guess whatever CF center they go to will recommend further testing for the other twin, right??. They didn't mention the other twin at all in regards to CF. Am I right in thinking that they need to investigate further for the other twins sake?
 
S

Skye

New member
We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out.

This family wants help and support. They are newly dx'd probably by state mandated newborn screening. They probably have not even seen a CF specialist yet. My BIG concern is that the other twin may also have CF and that the newborn screening has not picked this up. I guess whatever CF center they go to will recommend further testing for the other twin, right??. They didn't mention the other twin at all in regards to CF. Am I right in thinking that they need to investigate further for the other twins sake?
 
S

Skye

New member
We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out.

This family wants help and support. They are newly dx'd probably by state mandated newborn screening. They probably have not even seen a CF specialist yet. My BIG concern is that the other twin may also have CF and that the newborn screening has not picked this up. I guess whatever CF center they go to will recommend further testing for the other twin, right??. They didn't mention the other twin at all in regards to CF. Am I right in thinking that they need to investigate further for the other twins sake?
 
S

Skye

New member
We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out.
<br />
<br />This family wants help and support. They are newly dx'd probably by state mandated newborn screening. They probably have not even seen a CF specialist yet. My BIG concern is that the other twin may also have CF and that the newborn screening has not picked this up. I guess whatever CF center they go to will recommend further testing for the other twin, right??. They didn't mention the other twin at all in regards to CF. Am I right in thinking that they need to investigate further for the other twins sake?
 
J

juls

Guest
I am an identical twin, so I have some knowledge in this area.

Are the twins identical or fraternal?

If they are identical, they both should have tripped the newborn screen because identical twins are the same genetically. Identical twins happen when an egg splits. That is why identical twins are always the same sex.

Fratenal twins are just like any other siblings. Two eggs happen to be fertilized at the same time. It would definitely be possible for one twin to have CF and the other not. In fact, I met a mother at the CFRI conference last year who had twins and one had CF and the other didn't.

If they know the mutations of the twin with CF then the genetic test for the other would be pretty simple and they could find out if the other twin is a carrier or not.

I think one of the parents would have to have CF themselves for a third mutation to come into play...I am sure someone here knows the genetics of this better than I do!

Hope this helps!
 
J

juls

Guest
I am an identical twin, so I have some knowledge in this area.

Are the twins identical or fraternal?

If they are identical, they both should have tripped the newborn screen because identical twins are the same genetically. Identical twins happen when an egg splits. That is why identical twins are always the same sex.

Fratenal twins are just like any other siblings. Two eggs happen to be fertilized at the same time. It would definitely be possible for one twin to have CF and the other not. In fact, I met a mother at the CFRI conference last year who had twins and one had CF and the other didn't.

If they know the mutations of the twin with CF then the genetic test for the other would be pretty simple and they could find out if the other twin is a carrier or not.

I think one of the parents would have to have CF themselves for a third mutation to come into play...I am sure someone here knows the genetics of this better than I do!

Hope this helps!
 
J

juls

Guest
I am an identical twin, so I have some knowledge in this area.

Are the twins identical or fraternal?

If they are identical, they both should have tripped the newborn screen because identical twins are the same genetically. Identical twins happen when an egg splits. That is why identical twins are always the same sex.

Fratenal twins are just like any other siblings. Two eggs happen to be fertilized at the same time. It would definitely be possible for one twin to have CF and the other not. In fact, I met a mother at the CFRI conference last year who had twins and one had CF and the other didn't.

If they know the mutations of the twin with CF then the genetic test for the other would be pretty simple and they could find out if the other twin is a carrier or not.

I think one of the parents would have to have CF themselves for a third mutation to come into play...I am sure someone here knows the genetics of this better than I do!

Hope this helps!
 
J

juls

Guest
I am an identical twin, so I have some knowledge in this area.

Are the twins identical or fraternal?

If they are identical, they both should have tripped the newborn screen because identical twins are the same genetically. Identical twins happen when an egg splits. That is why identical twins are always the same sex.

Fratenal twins are just like any other siblings. Two eggs happen to be fertilized at the same time. It would definitely be possible for one twin to have CF and the other not. In fact, I met a mother at the CFRI conference last year who had twins and one had CF and the other didn't.

If they know the mutations of the twin with CF then the genetic test for the other would be pretty simple and they could find out if the other twin is a carrier or not.

I think one of the parents would have to have CF themselves for a third mutation to come into play...I am sure someone here knows the genetics of this better than I do!

Hope this helps!
 
J

juls

Guest
I am an identical twin, so I have some knowledge in this area.
<br />
<br />Are the twins identical or fraternal?
<br />
<br />If they are identical, they both should have tripped the newborn screen because identical twins are the same genetically. Identical twins happen when an egg splits. That is why identical twins are always the same sex.
<br />
<br />Fratenal twins are just like any other siblings. Two eggs happen to be fertilized at the same time. It would definitely be possible for one twin to have CF and the other not. In fact, I met a mother at the CFRI conference last year who had twins and one had CF and the other didn't.
<br />
<br />If they know the mutations of the twin with CF then the genetic test for the other would be pretty simple and they could find out if the other twin is a carrier or not.
<br />
<br />I think one of the parents would have to have CF themselves for a third mutation to come into play...I am sure someone here knows the genetics of this better than I do!
<br />
<br />Hope this helps!
 
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saveferris2009

New member
ya i agree - i would think that since they have the same mutations (if, in fact they BOTH have CF) they should both trip off the newborn screening.

but further investigating never hurt anything....

i'm assuming they're fraternal because if they're identical, no further testing is needed - identicals have the exact same genes <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

saveferris2009

New member
ya i agree - i would think that since they have the same mutations (if, in fact they BOTH have CF) they should both trip off the newborn screening.

but further investigating never hurt anything....

i'm assuming they're fraternal because if they're identical, no further testing is needed - identicals have the exact same genes <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

saveferris2009

New member
ya i agree - i would think that since they have the same mutations (if, in fact they BOTH have CF) they should both trip off the newborn screening.

but further investigating never hurt anything....

i'm assuming they're fraternal because if they're identical, no further testing is needed - identicals have the exact same genes <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

saveferris2009

New member
ya i agree - i would think that since they have the same mutations (if, in fact they BOTH have CF) they should both trip off the newborn screening.

but further investigating never hurt anything....

i'm assuming they're fraternal because if they're identical, no further testing is needed - identicals have the exact same genes <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

saveferris2009

New member
ya i agree - i would think that since they have the same mutations (if, in fact they BOTH have CF) they should both trip off the newborn screening.
<br />
<br />but further investigating never hurt anything....
<br />
<br />i'm assuming they're fraternal because if they're identical, no further testing is needed - identicals have the exact same genes <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

Skye

New member
thanks guys.....yes, your posts make sense and I am sure that is right. I wasn't thinking right when I posted this. I am a little shocked. If anyone has some good advice I can pass on to this family with a one week old, I would appreciate it....I know the obvious ones like getting to a good CF center; but, if you have any words of wisdom beyond that. They are having a very tough time with this dx.
 
S

Skye

New member
thanks guys.....yes, your posts make sense and I am sure that is right. I wasn't thinking right when I posted this. I am a little shocked. If anyone has some good advice I can pass on to this family with a one week old, I would appreciate it....I know the obvious ones like getting to a good CF center; but, if you have any words of wisdom beyond that. They are having a very tough time with this dx.
 
S

Skye

New member
thanks guys.....yes, your posts make sense and I am sure that is right. I wasn't thinking right when I posted this. I am a little shocked. If anyone has some good advice I can pass on to this family with a one week old, I would appreciate it....I know the obvious ones like getting to a good CF center; but, if you have any words of wisdom beyond that. They are having a very tough time with this dx.
 
S

Skye

New member
thanks guys.....yes, your posts make sense and I am sure that is right. I wasn't thinking right when I posted this. I am a little shocked. If anyone has some good advice I can pass on to this family with a one week old, I would appreciate it....I know the obvious ones like getting to a good CF center; but, if you have any words of wisdom beyond that. They are having a very tough time with this dx.
 
S

Skye

New member
thanks guys.....yes, your posts make sense and I am sure that is right. I wasn't thinking right when I posted this. I am a little shocked. If anyone has some good advice I can pass on to this family with a one week old, I would appreciate it....I know the obvious ones like getting to a good CF center; but, if you have any words of wisdom beyond that. They are having a very tough time with this dx.
 
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