do you think there will be a time when cf will have been made "extinct" , for want of a better word." I AM DEFINATELY NOT TALKING TERMINATION" what i mean is babies are tested at birth, so in future generations everyone will know whether they carry the cf gene or not. then with genetic counciling and that new "ivf screening thing".<img src="i/expressions/face-icon-small-frown.gif" border="0"> (sorry for ignorance) cf could be stopped!!!!!!!could it really happen? sorry i have'nt put it as eloquently as i would have liked,i'm tired!<img src="i/expressions/face-icon-small-blush.gif" border="0">
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making cf "extinct"
- Thread starter janjoe
- Start date
sarabeth87
New member
making cf "extinct
I personally don't think it will ever be 'extinct'. Even if people do know that they are carriers, many people can't afford things like IVF.
I personally don't think it will ever be 'extinct'. Even if people do know that they are carriers, many people can't afford things like IVF.
making cf "extinct
designer babies are already here. in the UK you can chose your baby's eye color (i think it costs a lot of $$$$).
eventually IVF will be free or extensively covered by insurance in developed countries like Europe, the US, Canada, NZ, and Australia.... thereby allowing people to avoid certain genetic diseases like CF.
So I think you're definitely on to something....
Living in So. Cal, 1/2 of the CF patients here are hispanic. SO there are many in Mexico who have CF who barely have access to antibiotics, let alone IVF. So in more rural countries, I think CF will continue.
designer babies are already here. in the UK you can chose your baby's eye color (i think it costs a lot of $$$$).
eventually IVF will be free or extensively covered by insurance in developed countries like Europe, the US, Canada, NZ, and Australia.... thereby allowing people to avoid certain genetic diseases like CF.
So I think you're definitely on to something....
Living in So. Cal, 1/2 of the CF patients here are hispanic. SO there are many in Mexico who have CF who barely have access to antibiotics, let alone IVF. So in more rural countries, I think CF will continue.
making cf
I think what Amy said is right. There are already 14 states in the US that mandate coverage for infertility treatment, although I believe only 13 cover IVF. Although, there are cases where an ins. company Does NOT cover IVF but they will grant it on a case by case basis for a family that already has a CFer and says, "heres the deal ins. company, we're having another baby so you can help us out and pay one time about $15k so we can do IVF with PGD, OR you can have us risk having another child with CF and pay about $150k just at birth for CF related expenses....". Surprisingly, a number of couples have been successful in getting their IVF with PGD covered this way.
Theoretically, YES, I do think it is a possiblity. There are alwasy that handful of people who will refuse carrier testing though... thats where we won't be able to control it all.
What a thinker though!
I think what Amy said is right. There are already 14 states in the US that mandate coverage for infertility treatment, although I believe only 13 cover IVF. Although, there are cases where an ins. company Does NOT cover IVF but they will grant it on a case by case basis for a family that already has a CFer and says, "heres the deal ins. company, we're having another baby so you can help us out and pay one time about $15k so we can do IVF with PGD, OR you can have us risk having another child with CF and pay about $150k just at birth for CF related expenses....". Surprisingly, a number of couples have been successful in getting their IVF with PGD covered this way.
Theoretically, YES, I do think it is a possiblity. There are alwasy that handful of people who will refuse carrier testing though... thats where we won't be able to control it all.
What a thinker though!
making cf "extinct
Maybe I'm a dork and don't get this topic, but are you talking that people would get tested as being carriers and if they are, they would not have children in order to eradicate CF? Aren't there an awful lot of carriers out there that would have to not have children then just in case they pass the gene on? I'm confused what this all means? If they do pass on the gene and their child doesn't have CF, but carries a gene, and that CF carrier marries and has children with another person who is a carrier only, BAM... there you have a case of CF. So, you're saying the two carriers would have to not have children together, right? Hmmmm....
*scratching head and realizing why slept through genetics class*
Maybe I'm a dork and don't get this topic, but are you talking that people would get tested as being carriers and if they are, they would not have children in order to eradicate CF? Aren't there an awful lot of carriers out there that would have to not have children then just in case they pass the gene on? I'm confused what this all means? If they do pass on the gene and their child doesn't have CF, but carries a gene, and that CF carrier marries and has children with another person who is a carrier only, BAM... there you have a case of CF. So, you're saying the two carriers would have to not have children together, right? Hmmmm....
*scratching head and realizing why slept through genetics class*
making cf "extinct
lol sonia <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think what you said is right on. Those who are carriers would 1. have to stop having children or 2. do IVF with PGD to sort out the embryos that have CF but I'd go one step further in disucssing erradication and say that for #2. they'd have to not use any of the embryos that were carriers too. And now thinking abou it, that would necessitate (if we were to erradicate CF) IVF with PGD for ANYONE who is a carrier so more carriers would not be born.
Very interesting topic.
lol sonia <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think what you said is right on. Those who are carriers would 1. have to stop having children or 2. do IVF with PGD to sort out the embryos that have CF but I'd go one step further in disucssing erradication and say that for #2. they'd have to not use any of the embryos that were carriers too. And now thinking abou it, that would necessitate (if we were to erradicate CF) IVF with PGD for ANYONE who is a carrier so more carriers would not be born.
Very interesting topic.
making cf "extinct
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
As much as i hate to say it , theres only one way it will ever happen............ if the cf gene carriers never have children. Thats about the only way i can see it happening . Harsh as it is * shrugs*</end quote></div>
Yep, I agree. The only way to stop any terminal disease (aside from cancer, as that's mostly unpredictable and not really based on genetics), afflicted individuals would have to stop breeding. And even then, nature has a way of getting the upper hand. Something else would just replace it, possibly something even worse. A vicious cycle...
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
As much as i hate to say it , theres only one way it will ever happen............ if the cf gene carriers never have children. Thats about the only way i can see it happening . Harsh as it is * shrugs*</end quote></div>
Yep, I agree. The only way to stop any terminal disease (aside from cancer, as that's mostly unpredictable and not really based on genetics), afflicted individuals would have to stop breeding. And even then, nature has a way of getting the upper hand. Something else would just replace it, possibly something even worse. A vicious cycle...
making cf "extinct
I don't believe it will ever be eliminated in that fashion. There are what, ten million carriers in the US? And these carriers are constantly giving birth to other carriers.
Even if people screened, I'd imagine many parents wish to have their children naturally, rather than something Gattaca-esque. Now think about this...the median age is 36 now. It will no doubt continue to go up. Look at the happy lives people with CF here can live. If ten years from now someone said, "your child will have CF, the median age of death is now 45 years old, and this is what kind of treatments/symptoms they will have...", I don't think it would be cruel of them to give birth to such a person. CF sucks and is a cruel disease in itself, but there are too many wonderful people that have it to think it is something we will simply breed out of existence. Hopefully we'll just cure it.
I don't believe it will ever be eliminated in that fashion. There are what, ten million carriers in the US? And these carriers are constantly giving birth to other carriers.
Even if people screened, I'd imagine many parents wish to have their children naturally, rather than something Gattaca-esque. Now think about this...the median age is 36 now. It will no doubt continue to go up. Look at the happy lives people with CF here can live. If ten years from now someone said, "your child will have CF, the median age of death is now 45 years old, and this is what kind of treatments/symptoms they will have...", I don't think it would be cruel of them to give birth to such a person. CF sucks and is a cruel disease in itself, but there are too many wonderful people that have it to think it is something we will simply breed out of existence. Hopefully we'll just cure it.
thelizardqueen
New member
making cf
I would sooner think that eventually down the line, somewhere in the distant future, they'll be able to cure CF in the womb you would think, but who knows.
I would sooner think that eventually down the line, somewhere in the distant future, they'll be able to cure CF in the womb you would think, but who knows.
making cf "extinct
I hope not to get bashed on this one but......................A "cure" aint gonna happen in my eyes , i would definitely never count on THAT to help get rid of cf. I imagine there will definitely be a better treatment, but even with the best treatments, some will still die young ( and suffer needlessly) and if that can be avoided by not having children if you are a cf gene carrier, then why wouldnt you do it?
I hope not to get bashed on this one but......................A "cure" aint gonna happen in my eyes , i would definitely never count on THAT to help get rid of cf. I imagine there will definitely be a better treatment, but even with the best treatments, some will still die young ( and suffer needlessly) and if that can be avoided by not having children if you are a cf gene carrier, then why wouldnt you do it?
making cf "extinct
Mike's parents were both obviously carriers. There was no history of cf in either family. So why would they be tested before getting pregnant? They wouldn't. That doesn't make any sense. In that case you'd have to be tested for every possible hereditary condition ever.
And I am so glad they didn't because Mike loves his life. His life is definitly worth living. And mine wouldn't be without him.
This topic makes me uneasy. I understand that if I had a child and they were born with cf there would be hardships. And I realize I don't have cf and can't speak for anyone. But I'm sure most cfers would agree they are glad for the lives they have? Mike says he wouldn't be who he is today without cf. It's shaped him into who he is today. OF COURSE I wish he was healthy, but I love him the way he is.
I semi-expect to be bashed for this. Hit me with your best shot.
Mike's parents were both obviously carriers. There was no history of cf in either family. So why would they be tested before getting pregnant? They wouldn't. That doesn't make any sense. In that case you'd have to be tested for every possible hereditary condition ever.
And I am so glad they didn't because Mike loves his life. His life is definitly worth living. And mine wouldn't be without him.
This topic makes me uneasy. I understand that if I had a child and they were born with cf there would be hardships. And I realize I don't have cf and can't speak for anyone. But I'm sure most cfers would agree they are glad for the lives they have? Mike says he wouldn't be who he is today without cf. It's shaped him into who he is today. OF COURSE I wish he was healthy, but I love him the way he is.
I semi-expect to be bashed for this. Hit me with your best shot.
thelizardqueen
New member
making cf
I completly agree with you Katy. Carrier testing only tests for common genes, not the very uncommon ones. So regardless of whether you come back with a clean bill of health and are told you aren't a carrier, there's still the chance that you are a carrier of an uncommon gene. Therefor your kid could still have CF. May as well just not have kids if you're worried about it. Cory and I have talked about trying for kids anyway even if he is a carrier, because we do have that 50% of not having a CF kid. We're still not sure on the topic, but CF has made me the person I am today. Yeah, CF does suck, but who knows - by the time we have kids (god willing that we do), there may be treatment for CF, or the median age will be 50 or higher! 50 is a long time to live!
I completly agree with you Katy. Carrier testing only tests for common genes, not the very uncommon ones. So regardless of whether you come back with a clean bill of health and are told you aren't a carrier, there's still the chance that you are a carrier of an uncommon gene. Therefor your kid could still have CF. May as well just not have kids if you're worried about it. Cory and I have talked about trying for kids anyway even if he is a carrier, because we do have that 50% of not having a CF kid. We're still not sure on the topic, but CF has made me the person I am today. Yeah, CF does suck, but who knows - by the time we have kids (god willing that we do), there may be treatment for CF, or the median age will be 50 or higher! 50 is a long time to live!
making cf "extinct
Dear Katy,
I do not want to bash you. If you were in front of me I would kiss and hug you. I agree that this subject makes me uneasy too. I prefer we put our energy on finding a cure. Having cf has definently helped shape the person I am. I remember reading about a study 7 years ago where 80 pregnant couples had their child tested to see if their child carried the cf genes. Every child was aborted that carried two genes. I was sad to read this because I know that if I was in their womb I wouldn't have had the opportunity, this awesome gift of life, which I am so gratful for. Even sadder still, every baby that carried one gene was aborted as well with the thought that the baby could have a gene not tested for. That would have meant both my parents, my siblings, and my three children would have been found not worthy of life. This is just my perspective but it hurt to read about that study and you have to ask yourself where will this lead and how is this going to affect us as a society. I am grateful to my parents for their love and sacrafices, to my husband of 25 years who saw much more in me than cf and my three children who I know love me dearly as their mom and who most certainly would not be here if I didn't exist. Would I like not to have cf, sure. But I would choose having cf and being alive over having cf and never being born. Thank you to all the parents, siblings, spouses, partners, children, extended family and friends for finding worth and value in who we are, your loved ones living with cf.<img src="i/expressions/heart.gif" border="0">
Dear Katy,
I do not want to bash you. If you were in front of me I would kiss and hug you. I agree that this subject makes me uneasy too. I prefer we put our energy on finding a cure. Having cf has definently helped shape the person I am. I remember reading about a study 7 years ago where 80 pregnant couples had their child tested to see if their child carried the cf genes. Every child was aborted that carried two genes. I was sad to read this because I know that if I was in their womb I wouldn't have had the opportunity, this awesome gift of life, which I am so gratful for. Even sadder still, every baby that carried one gene was aborted as well with the thought that the baby could have a gene not tested for. That would have meant both my parents, my siblings, and my three children would have been found not worthy of life. This is just my perspective but it hurt to read about that study and you have to ask yourself where will this lead and how is this going to affect us as a society. I am grateful to my parents for their love and sacrafices, to my husband of 25 years who saw much more in me than cf and my three children who I know love me dearly as their mom and who most certainly would not be here if I didn't exist. Would I like not to have cf, sure. But I would choose having cf and being alive over having cf and never being born. Thank you to all the parents, siblings, spouses, partners, children, extended family and friends for finding worth and value in who we are, your loved ones living with cf.<img src="i/expressions/heart.gif" border="0">
making cf "extinct
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katyf13</b></i>
Mike's parents were both obviously carriers. There was no history of cf in either family. So why would they be tested before getting pregnant? They wouldn't. That doesn't make any sense. In that case you'd have to be tested for every possible hereditary condition ever. </end quote></div>
Katy, you ask why would someone be tested before getting pregnant if there is no family history of CF??? In many states now it is common practice for a husband and a wife to be tested for an array of genetic problems once they disclose to their family practice doctor that they are contemplating starting a family.
Also, if they don't have testing at the pre-conception point, many OBGYN doctors recommend it so that a family can plan if they are already pregnant.
Not sure if you were asking a rethorical question, but just wanted to interject.
I too am glad that Mark's parents had him, he's a wonderful man and I feel the same way you do. Life would be worth it without him in my life, he's made such a difference!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katyf13</b></i>
Mike's parents were both obviously carriers. There was no history of cf in either family. So why would they be tested before getting pregnant? They wouldn't. That doesn't make any sense. In that case you'd have to be tested for every possible hereditary condition ever. </end quote></div>
Katy, you ask why would someone be tested before getting pregnant if there is no family history of CF??? In many states now it is common practice for a husband and a wife to be tested for an array of genetic problems once they disclose to their family practice doctor that they are contemplating starting a family.
Also, if they don't have testing at the pre-conception point, many OBGYN doctors recommend it so that a family can plan if they are already pregnant.
Not sure if you were asking a rethorical question, but just wanted to interject.
I too am glad that Mark's parents had him, he's a wonderful man and I feel the same way you do. Life would be worth it without him in my life, he's made such a difference!
making cf "extinct
to katy, all babies are tested at birth in the uk for the cf gene ( i don't know the situation elsewhere) that means all babies born in uk since 1997 will know if they carry the cf gene.<img src="i/expressions/face-icon-small-smile.gif" border="0"> to ladybug, i definately did not intend to suggest if a couple both had cf genes they should not have children, just that they could , if they wanted to, do that ivf procedure. i'm sorry if my post seemed to imply that i don't think people with cf lead productive lives, it wasn't intended.<img src="i/expressions/face-icon-small-blush.gif" border="0">
to katy, all babies are tested at birth in the uk for the cf gene ( i don't know the situation elsewhere) that means all babies born in uk since 1997 will know if they carry the cf gene.<img src="i/expressions/face-icon-small-smile.gif" border="0"> to ladybug, i definately did not intend to suggest if a couple both had cf genes they should not have children, just that they could , if they wanted to, do that ivf procedure. i'm sorry if my post seemed to imply that i don't think people with cf lead productive lives, it wasn't intended.<img src="i/expressions/face-icon-small-blush.gif" border="0">
making cf "extinct
Janjoe- I know you didn't intend that, don't worry!! Babies are not tested unless for a reason here.
Julie - I work in Early Intervention with familes with babies under the age of 3 in an urban area. VERY few of the kids I see were planned. Many have little or no pre-natal care and some are born addicted to drugs. Not many are your typical husband and wife couple and most don't have access or even knowledge of genetic counseling. I just don't think it's realistic to ever "eradicate" a genetic disorder like cf through genetic counseling. Although I understand your point that it helps many families. It certainly does!!
Janjoe- I know you didn't intend that, don't worry!! Babies are not tested unless for a reason here.
Julie - I work in Early Intervention with familes with babies under the age of 3 in an urban area. VERY few of the kids I see were planned. Many have little or no pre-natal care and some are born addicted to drugs. Not many are your typical husband and wife couple and most don't have access or even knowledge of genetic counseling. I just don't think it's realistic to ever "eradicate" a genetic disorder like cf through genetic counseling. Although I understand your point that it helps many families. It certainly does!!