DF508 is also tested for on every single panel test~ any test the dr orders (i.e. the cheap 37 mutation panels) will always include that one. In our case as well, that's the gene I carry and it's so much easier to catch that one than some obscure one requiring expensive testing. It's tough in my dh's case~ we don't know his mutation so it's impossible to know which family members are carriers and which are not, so testing of 'significant others' is essential when it comes to anyone on that side of childbearing age. Some have done it, some have not. It's a VERY big family... to be honest, I wouldn't be surprised to see CF crop up again.
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CF Granddaughter: basic question
- Thread starter CeliacNana
- Start date
CeliacNana
New member
Our Molly has Delta F508 (apparently the most common Caucasian gene) and W1281x (or 2X??) - apparently the most common Jewish gene. Interesting, since we don't know of any Jewish background in any of the families.
This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
CeliacNana
New member
Our Molly has Delta F508 (apparently the most common Caucasian gene) and W1281x (or 2X??) - apparently the most common Jewish gene. Interesting, since we don't know of any Jewish background in any of the families.
This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
CeliacNana
New member
Our Molly has Delta F508 (apparently the most common Caucasian gene) and W1281x (or 2X??) - apparently the most common Jewish gene. Interesting, since we don't know of any Jewish background in any of the families.
<br />
<br />This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
<br />
<br />I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
<br />
<br />This is especially hard for us, as our son and his family are in New Zealand. Hatings right now that they are so far away.
<br />
<br />I want to thank everyone for your very thoughtful replies. I think I will check with my doctor next time I visit and see if she will do the testing. It's a couple of generations down already who are having kids, but if we can make anyone aware of the risks, I think it's worth it.
If anyone is still reading this thread, please note:
The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
If anyone is still reading this thread, please note:
The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
If anyone is still reading this thread, please note:
<br />
<br />The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
<br />
<br />The Ambry test to order if you only wanted to screen for carrier status of the DF508 mutation would actually be "508 <i><b>Only</b></i>" because with their "508 First" test, if a carrier is negative for DF508, Ambry would automatically continue on with their "CF Amplified" test, which is a more expensive test and possibly beyond the scope of what the patient wanted.
M
Mommafirst
Guest
CeliacNana -- I'm so sorry for what your family is going through. I have to admit though, that I don't really see the benefit of you and your husband being tested for the CF gene at this point. I'd think it would be more important to encourage those of child bearing years to be tested for the two mutations you know run in the family.
M
Mommafirst
Guest
CeliacNana -- I'm so sorry for what your family is going through. I have to admit though, that I don't really see the benefit of you and your husband being tested for the CF gene at this point. I'd think it would be more important to encourage those of child bearing years to be tested for the two mutations you know run in the family.
M
Mommafirst
Guest
CeliacNana -- I'm so sorry for what your family is going through. I have to admit though, that I don't really see the benefit of you and your husband being tested for the CF gene at this point. I'd think it would be more important to encourage those of child bearing years to be tested for the two mutations you know run in the family.
theLostMiler
New member
I was the first one in the family to have CF, and my mom <i>did</i> (she lost the paper way before I started understanding the biology of it all haha) have my mutations and told family members who were married and wanted/expected to have kids to get tested for my gene... a few have, others have not, still I am the only with CF so far.
I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
so D is a dominant gene and R is a recessive gene (Or CF gene).
So if you start out with parents that have one of each (making them both carriers)
DR DR
DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
DR DD (one carrier, one not)
DD DD RD RD (so no CF, but 50% chance of carrying gene)
etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
RR DR
RD RR RD RR (50% chance of offspring having CF)
RR DD
RD RD RD RD (so all would be carriers)
Sorry if no one needed this, its one of the only things I remember from high school biology haha.
I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
so D is a dominant gene and R is a recessive gene (Or CF gene).
So if you start out with parents that have one of each (making them both carriers)
DR DR
DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
DR DD (one carrier, one not)
DD DD RD RD (so no CF, but 50% chance of carrying gene)
etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
RR DR
RD RR RD RR (50% chance of offspring having CF)
RR DD
RD RD RD RD (so all would be carriers)
Sorry if no one needed this, its one of the only things I remember from high school biology haha.
theLostMiler
New member
I was the first one in the family to have CF, and my mom <i>did</i> (she lost the paper way before I started understanding the biology of it all haha) have my mutations and told family members who were married and wanted/expected to have kids to get tested for my gene... a few have, others have not, still I am the only with CF so far.
I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
so D is a dominant gene and R is a recessive gene (Or CF gene).
So if you start out with parents that have one of each (making them both carriers)
DR DR
DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
DR DD (one carrier, one not)
DD DD RD RD (so no CF, but 50% chance of carrying gene)
etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
RR DR
RD RR RD RR (50% chance of offspring having CF)
RR DD
RD RD RD RD (so all would be carriers)
Sorry if no one needed this, its one of the only things I remember from high school biology haha.
I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
so D is a dominant gene and R is a recessive gene (Or CF gene).
So if you start out with parents that have one of each (making them both carriers)
DR DR
DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
DR DD (one carrier, one not)
DD DD RD RD (so no CF, but 50% chance of carrying gene)
etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
RR DR
RD RR RD RR (50% chance of offspring having CF)
RR DD
RD RD RD RD (so all would be carriers)
Sorry if no one needed this, its one of the only things I remember from high school biology haha.
theLostMiler
New member
I was the first one in the family to have CF, and my mom <i>did</i> (she lost the paper way before I started understanding the biology of it all haha) have my mutations and told family members who were married and wanted/expected to have kids to get tested for my gene... a few have, others have not, still I am the only with CF so far.
<br />
<br />I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
<br />
<br />so D is a dominant gene and R is a recessive gene (Or CF gene).
<br />
<br />So if you start out with parents that have one of each (making them both carriers)
<br />
<br /> DR DR
<br /> DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
<br />
<br /> DR DD (one carrier, one not)
<br /> DD DD RD RD (so no CF, but 50% chance of carrying gene)
<br />
<br />etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
<br />
<br /> RR DR
<br /> RD RR RD RR (50% chance of offspring having CF)
<br />
<br /> RR DD
<br /> RD RD RD RD (so all would be carriers)
<br />
<br />Sorry if no one needed this, its one of the only things I remember from high school biology haha.
<br />
<br />
<br />
<br />
<br />I always have to write out the sequencing available to remember percentage wise the predictablitity of having cf.
<br />
<br />so D is a dominant gene and R is a recessive gene (Or CF gene).
<br />
<br />So if you start out with parents that have one of each (making them both carriers)
<br />
<br /> DR DR
<br /> DD DR RD RR (so 25% of offspring having CF, 50% being a carrier)
<br />
<br /> DR DD (one carrier, one not)
<br /> DD DD RD RD (so no CF, but 50% chance of carrying gene)
<br />
<br />etc... You can play that off with one parent having CF, the other being a Carrier, and the other non being a carrier...
<br />
<br /> RR DR
<br /> RD RR RD RR (50% chance of offspring having CF)
<br />
<br /> RR DD
<br /> RD RD RD RD (so all would be carriers)
<br />
<br />Sorry if no one needed this, its one of the only things I remember from high school biology haha.
<br />
<br />
<br />
CeliacNana
New member
Thanks Heather.
I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
CeliacNana
New member
Thanks Heather.
I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
CeliacNana
New member
Thanks Heather.
<br />
<br />I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
<br />
<br />Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
<br />
<br />I guess I just thought if my hubby and I get tested, then we will know whether to let my side of the family know, or his. Rather than making everyone concerned!
<br />
<br />Ironically, our daughter has just begun dating a fellow who has a cousin with CF.
That is a good point and I understand why you'd want to be able to let the affected side of the family know. Be aware that this may be guilt-provoking if you decide to go through with it, though (moreso than you think right now.) That being the case, I am glad my parents did not choose to do this (they considered it). Since I have the most common mutation, it's easy for all of child-bearing age to get screened for it and such a high percentage of the population are carriers that it can slip into the family through other relatives as well.
Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
That is a good point and I understand why you'd want to be able to let the affected side of the family know. Be aware that this may be guilt-provoking if you decide to go through with it, though (moreso than you think right now.) That being the case, I am glad my parents did not choose to do this (they considered it). Since I have the most common mutation, it's easy for all of child-bearing age to get screened for it and such a high percentage of the population are carriers that it can slip into the family through other relatives as well.
Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
That is a good point and I understand why you'd want to be able to let the affected side of the family know. Be aware that this may be guilt-provoking if you decide to go through with it, though (moreso than you think right now.) That being the case, I am glad my parents did not choose to do this (they considered it). Since I have the most common mutation, it's easy for all of child-bearing age to get screened for it and such a high percentage of the population are carriers that it can slip into the family through other relatives as well.
<br />
<br />Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
<br />
<br />Has your daughter been tested for carrier status? Not to put the cart in front of the horse, but the man your daughter is dating has a chance of being a carrier himself given he has a family member with CF.
CeliacNana
New member
Thanks Harriet.
Yes my daughter is very aware that if she should decide that this fellow is "the one", that they both need to be tested. She's 39 and may not end up having a family so it may not be an issue, but I still keep my fingers crossed that she will find the right man for her (after 9 years married to the wrong one) and that she will be able to have the family she always wanted.
Merry Christmas to you, and all the best in 2011.
Colleen
Yes my daughter is very aware that if she should decide that this fellow is "the one", that they both need to be tested. She's 39 and may not end up having a family so it may not be an issue, but I still keep my fingers crossed that she will find the right man for her (after 9 years married to the wrong one) and that she will be able to have the family she always wanted.
Merry Christmas to you, and all the best in 2011.
Colleen