Just wondeing...........

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js7881

New member
Ok, so I aven't been on here in awhile. Mydaughter alayna has CF. SHe was diagnosed in womb with Mecoonium Illeus. So,my husband and I are having a bit of a debate. He is trying to tell me that if neither parent has the CF gene that my dauhter can still be a carrier. That seems incorrect to me. Is that true?<img src="i/expressions/face-icon-small-confused.gif" border="0">

Anyway, my daughter was born 6-15-05. She had a rough start but now she is doing GREAT!!! When she goes to the doctors she is always at 95 percentile. SHe is 14 months old and weighs about 26 pounds. It's amazing.

We have been very lucky with her!!!
 
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NoExcuses

New member
genes are passed down from generation to generation.

so if you have a gene, that means you got it from your parents. end of story.

so if you're a carrier (which obviously you are cuz you daughter has CF), you got that gene from either you mom or your dad. same with your husband. he got his CF gene from either his mom or his dad.

Alayna had parents who both had CF genes. Therefore, her mom gave her a CF gene and her dad gave her a CF gene, so she has CF!
 
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js7881

New member
That's what I am trying to explain to m husband. He is trying to tell me that even without us being carriers Alayna could still be a carrier but not have it. I know how all of this works but he must be confused. This all came up because we are trying to make our xtended family knowledgeble.
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>js7881</b></i>

That's what I am trying to explain to m husband. He is trying to tell me that even without us being carriers Alayna could still be a carrier but not have it. I know how all of this works but he must be confused. This all came up because we are trying to make our xtended family knowledgeble.</end quote></div>



Let me clarify. Twice you have referrred to Alayna as a carrier, which she is not.

Your daughter is not a carrier, but rather a CF person.

<b>Carrier </b>= An individual that carries one gene for a particular recessive trait. A carrier does not express the trait but, when mated with another carrier, can produce offspring that do.

Carriers just have 1 copy of the defective gene (your daughter has 2 copies, so she is <u>not </u>a carrier).

You and your husband are carriers because you have 1 copy of the gene. If you each had 2 copies, then you would have CF
 
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js7881

New member
Ok, I don't think you are understanding what I am saying. I know my daughter has CF. <u>I am simply using Alayna as an example</u>.

Again, we are having a debate.....my husband is saying CF iS degenerative disease meaning no matter if we have the gene or not Alayna (as the example) coud've still been a carrier.

By the way I am aware my daughter has CF.
 
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JazzysMom

New member
Maybe your husband is thinking that its like an illness where things tend to skip generation. As we all know CF isnt like that. The gene doesnt skip generations. The illness might not show up depending on what 2 carriers get together & what odds work in their favor. I dont know if he is confused or what, but you are correct!
 
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NoExcuses

New member
ok. gotcha.

well your husband is still wrong. if you are a carrier of the CF gene, one of your parents has to be carrier too. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>js7881</b></i>

Also, Amy if you are going to be rude I don't need you replying to my post.</end quote></div>

how was i rude???? i was just making sure you understood terminology. not everyone is aware of terminology. I certainly wasn't when I was 1st diagnosed with CF!
 
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anonymous

New member
so what everyone is saying is the gene will never skip a generation it is passed down from grandparents way back years ago. The gene will not just pop up out of nowhere it has to be in the family somewhere even if noone has ever had the disease before or noone even heard of it before. So with Alayna even if both parents weren't a carrier she couldn't have inherited the gene from a grandparent it has to come from the parents
 
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JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

so what everyone is saying is the gene will never skip a generation it is passed down from grandparents way back years ago. The gene will not just pop up out of nowhere it has to be in the family somewhere even if noone has ever had the disease before or noone even heard of it before. So with Alayna even if both parents weren't a carrier she couldn't have inherited the gene from a grandparent it has to come from the parents</end quote></div>

100000% correct......this is why there are so many dx that have no family history such as mine. Until someone is dx with CF they arent even aware of anyone being a CF carrier!
 
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anonymous

New member
Thank you for clarifying that now trying to get family members to understand it is a different story the theory they have is we have never heard of it before and none of our kids have been sick so we must not be a carrier and I jsut hope that they never have to deal with this awful disease because of the ignorance of not getting tested to see if they could be passing this gene on to their kids or grandkids in years to come
 
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norcotrent

New member
Maybe it's just me but we haven't made a big deal about pushing family to get tested for carrier status. I guess my question is, "Are there people out there whom believe that two CF Carriers should not take the 1/4 chance?"

Dad, daughter w/CF
 
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Ratatosk

Administrator
Staff member
We haven't pushed or suggested carrier testing for any of our family members. We were the last of our siblings to have kids. There was no family history on either side of the family until DS. I suppose it's an awareness issue in the event our cousins or nieces and nephews start having kids, but I believe the states they live in either have carrier testing for the moms and/or newborn screening.

In our situation, I believe that DH and I shouldn't take the 1/4 chance knowing what we know now. Knowing several people who have more than one child wcf. But that's us. And several other factors -- we're over 40 and had planned to have two kids before we got to this age, and things just changed.
 
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anonymous

New member
its not that big of a deal about family members getting tested but i guess when its such a shock when you have no knowledge of this disease that you'd just like to know how many other family members are carring the same gene and try and find out which side of the family it originated from jsut a little bit of medical history just like any other disease that can be passed on. I know the chances of the children being born with CF is 1 and 4 and like with any pregnancy it is a chance you take to have a healthy baby these children are precious angels but to know a lilttle about the disease and the history of it would have been nice instead of during the middle of an ulstrasound and you are 5 months pregnant and they tell you we something wrong and its something that you know nothing about and the genetic counselors make it sound like a death sentence (or at least the one we dealt with). I guess trying to get family members to get tested is not that important but just medical history that can be used for further generations.
 
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anonymous

New member
with all the cases of CF being different so many peolpe can be affected in so many differnet ways some are more severe and some are very mild but if I had known about this disease and the possibilty of having a child being born and having to suffer the way that some patients do I might would have reconsidered having children fortunately so far things haven't been to bad for us just mostly digestive problems but other than that things are going pretty good
 
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anonymous

New member
Tell you the truth -- I don't think our family members -- cousins, siblings, relatives, want to know. As far as they're concerned it's a fluke and it won't happen to them.
 
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katyf13

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Tell you the truth -- I don't think our family members -- cousins, siblings, relatives, want to know. As far as they're concerned it's a fluke and it won't happen to them.</end quote></div>

Denial isn't just a river in Egypt! (Wicked cheesy saying that just popped into my head).
 
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