I think the point you are missing is that there are ways to have children without taking/or lessening the risk of having children with CF, adoption orIVF with PGD. I just don't understand wanting to take the chance to pass on this terrible disease when there are other options out there. But that is JMHO.
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Stats on People with CF and Carriers having Children with CF?
- Thread starter chantelfox
- Start date
To the 7:06 Anon:<br>
<br>
I could come back with a whole slew of things to counteract all of
that, but I won't because apparently you not only refuse to put a
name behind your words, but I don't even know if you have CF or
not. Which, if you think alcoholism and poverty are good
comparisons, I assume you don't. I see no point in debating
with someone who may or may not even know of what they speak.<br>
<br>
It was so nice when the anons were banned...
<br>
I could come back with a whole slew of things to counteract all of
that, but I won't because apparently you not only refuse to put a
name behind your words, but I don't even know if you have CF or
not. Which, if you think alcoholism and poverty are good
comparisons, I assume you don't. I see no point in debating
with someone who may or may not even know of what they speak.<br>
<br>
It was so nice when the anons were banned...
Chantelfox,
I just wanted to say hats off to you for being a grown up in an ugly situation. You came with some innocent questions, just asking for opinions, you were attacked in many ways by many people, and not once did you attack back. I think that says a lot about you and your maturity level. I won't even bother to give you my own opinions because you've had enough of them, I'm sure. I just wanted to say you deserve a lot of credit. Most people would not have taken this as well as you have. You're respectful attitude speaks volumes about you. I think you'd make a great parent whether biological or not as you have patience above and beyond the norm.
I just wanted to say hats off to you for being a grown up in an ugly situation. You came with some innocent questions, just asking for opinions, you were attacked in many ways by many people, and not once did you attack back. I think that says a lot about you and your maturity level. I won't even bother to give you my own opinions because you've had enough of them, I'm sure. I just wanted to say you deserve a lot of credit. Most people would not have taken this as well as you have. You're respectful attitude speaks volumes about you. I think you'd make a great parent whether biological or not as you have patience above and beyond the norm.
CFHockeyMom
New member
anon @ 7:06,
Thanks for calling me a biggot. Maybe you should ask me about my history before you do that. You're assuming, that I am not living in poverty nor have I ever. Making that assumption would be dead wrong on your part. I have lived in poverty and my husband and I worked damn hard so we wouldn't stay there. Yes, what you say is true, not everyone has the proper tools and for many poverty is a life sentence. I did not say they were lazy bums. Fact is no matter how to try to relate poverty to a fatal genetic disease it doesn't work. Poverty doesn't mean your are suffering or in pain nor does it necessarily mean your life is hard.
I don't think anyone here has ever said that those with CF should not have been born. What we're saying is that we wouldn't choose that life for our children. Again, if you know the risk and you choose to roll the dice, you are choosing to have a child with CF, whether they actually have it or not is moot. It's like choosing to drive home drunk. If I get home and haven't actually killed anyone or gotten stopped by the police, your argument suggests its ok.
Some die early and some die late??? Come on now, you can't actually buy that argument. The percentage of people without CF that die early is much higher than the percentage of CFers that live to the ripe old age of 77. Hence the reason the median age for CFers is ~36 and for the general population it's ~77. A median is just that a median, some live longer and some live shorter lives.
Yes, maybe it is eugenics but I'm okay with that. If through eugenics we could completey eradicate genetic disesase, you wouldn't support that?
Thanks for calling me a biggot. Maybe you should ask me about my history before you do that. You're assuming, that I am not living in poverty nor have I ever. Making that assumption would be dead wrong on your part. I have lived in poverty and my husband and I worked damn hard so we wouldn't stay there. Yes, what you say is true, not everyone has the proper tools and for many poverty is a life sentence. I did not say they were lazy bums. Fact is no matter how to try to relate poverty to a fatal genetic disease it doesn't work. Poverty doesn't mean your are suffering or in pain nor does it necessarily mean your life is hard.
I don't think anyone here has ever said that those with CF should not have been born. What we're saying is that we wouldn't choose that life for our children. Again, if you know the risk and you choose to roll the dice, you are choosing to have a child with CF, whether they actually have it or not is moot. It's like choosing to drive home drunk. If I get home and haven't actually killed anyone or gotten stopped by the police, your argument suggests its ok.
Some die early and some die late??? Come on now, you can't actually buy that argument. The percentage of people without CF that die early is much higher than the percentage of CFers that live to the ripe old age of 77. Hence the reason the median age for CFers is ~36 and for the general population it's ~77. A median is just that a median, some live longer and some live shorter lives.
Yes, maybe it is eugenics but I'm okay with that. If through eugenics we could completey eradicate genetic disesase, you wouldn't support that?
Once again, people seem only capable of judging a worthwhile life based on quantity of years. If someone claims they are not inferior to others and just as happy, yet say it's selfish for people to have a child knowing the risk for CF, then they contradict themselves or aren't being truthful. I believe life is worth living even if it is for only 20 years. Who here would ask their parents to have chosen not to have them, honestly? How many future children with CF would have wished the same? People have a will to live, poverty was to show that even those that are stuck with miserable fates still have a will to live and that their lives are still worthwhile. Now if you think I am talking only about poverty in first world nations, get real. I am guessing no one here has starved to death in third world nations, maybe we should ask them to stop having children. Yea you might be able to "work" your way out of it in Africa, but good luck, you would have a better chance with CF.
Yes it is possible to work out of poverty and don't have that control over CF, that isn't the comparison between the two. The only comparisons are QUALITY of life and when a life is or isn't worth living. To me life is only not worth living when you do not have happiness. CF does not prevent happiness. It makes things difficult, like poverty. On average it cuts people's lives in half, that is true too. Would you choose 35 years of happiness or 70 years of misery? Not to mention treatments get better and better, children born with CF today could live into their 40s or 50s on average, there's no reason to believe otherwise.
I would never support asking people to not have children unless they weren't fit to raise the child.
Yes it is possible to work out of poverty and don't have that control over CF, that isn't the comparison between the two. The only comparisons are QUALITY of life and when a life is or isn't worth living. To me life is only not worth living when you do not have happiness. CF does not prevent happiness. It makes things difficult, like poverty. On average it cuts people's lives in half, that is true too. Would you choose 35 years of happiness or 70 years of misery? Not to mention treatments get better and better, children born with CF today could live into their 40s or 50s on average, there's no reason to believe otherwise.
I would never support asking people to not have children unless they weren't fit to raise the child.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i> Yes, maybe it is
eugenics but I'm okay with that. If through eugenics we could
completey eradicate genetic disesase, you wouldn't support
that?</end quote></div><br>
<br>
Of course not, Claudette! Its not politically correct!
You can't suggest something that makes sense and isn't PC!
Its against the rules!<br>
<br>
</sarcasm>
eugenics but I'm okay with that. If through eugenics we could
completey eradicate genetic disesase, you wouldn't support
that?</end quote></div><br>
<br>
Of course not, Claudette! Its not politically correct!
You can't suggest something that makes sense and isn't PC!
Its against the rules!<br>
<br>
</sarcasm>
<div class="FTQUOTE"><begin quote>Who here would ask their parents to have chosen not to have them, honestly?</end quote></div>
We're not arguing for retroactive abortion. We're saying "Don't tempt fate, Cf sucks".
<div class="FTQUOTE"><begin quote>I am guessing no one here has starved to death in third world nations, maybe we should ask them to stop having children.</end quote></div>
If they can't afford to feed them? Yes, we probably should.
It's not CF or something else, it's CF PLUS everything else. I can't see, how someone who says they love and care about thier children, can say "Let's have a child that we know will die slowly and painfully of respiratory failure". I am going to assume you have never held your child down for an IV while he begged you to stop, like Claudette said. I am also going to assume you have never had someone you love get so weak, they can't even take a shower. I think, if people saw of very, very ugly CF can be they would think twice, but we are obviously not going to agree.
We're not arguing for retroactive abortion. We're saying "Don't tempt fate, Cf sucks".
<div class="FTQUOTE"><begin quote>I am guessing no one here has starved to death in third world nations, maybe we should ask them to stop having children.</end quote></div>
If they can't afford to feed them? Yes, we probably should.
It's not CF or something else, it's CF PLUS everything else. I can't see, how someone who says they love and care about thier children, can say "Let's have a child that we know will die slowly and painfully of respiratory failure". I am going to assume you have never held your child down for an IV while he begged you to stop, like Claudette said. I am also going to assume you have never had someone you love get so weak, they can't even take a shower. I think, if people saw of very, very ugly CF can be they would think twice, but we are obviously not going to agree.
Here's the thing... Chantel DID NOT ask anyones opinion on having a child with or without CF... <b>she asked for the <u>statistics</u> of having a child, based on a situation A and situation B</b>
<div class="FTQUOTE"><begin quote>Hey everyone!! I hope you all are doind great this week, so far... So, does anyone know what the statistics are on people with CF having kids with CF Carriers??? Do the chances of having kids with CF increase??? </end quote></div>
The question she asked has been accurately answered a dozen times over so maybe we should just leave it...
<div class="FTQUOTE"><begin quote>Hey everyone!! I hope you all are doind great this week, so far... So, does anyone know what the statistics are on people with CF having kids with CF Carriers??? Do the chances of having kids with CF increase??? </end quote></div>
The question she asked has been accurately answered a dozen times over so maybe we should just leave it...
Allie, many people do not die peacefully and happily, sadly that's part of life. You're right about children, I have no children nor do I want any. Children cry and ask to stop many things, I remember having to be dragged from my room by force as a child to get a surgery, crying all the way. Children in general will behave this way, I don't see it as a valid argument. Obviously I do not have CF but my partner does and she is worse off at a younger age than the vast majority of the regular posters on this forum, but it doesn't matter. I know and have seen the ugliness of CF, not CF death, but I will see it eventually and know it will probably ruin the rest of my life, but I wouldn't ever regret being together with her, much like as a parent I wouldn't regret having a child with CF. I've had to witness deaths just as terrible from various cancers and I've accepted it as part of life. It still won't sway my argument, it is better to live than not live and no one has argued otherwise. If you're a CFer and living a miserable life, then I can understand why you wouldn't support it, but so far people say they live happy lives that aren't inferior in quality. I'm not arguing that people should CHOOSE to have children with CF, but that they shouldn't decide not to have children because there's a chance to have one. It is no guarantee, and I doubt my partner is the only wonderful person in the world with CF. Quality is better than quantity.
<div class="FTQUOTE"><begin quote>Children cry and ask to stop many things</end quote></div>
My daughter has never cried and asked to stop because she is in pain.
<div class="FTQUOTE"><begin quote>I remember having to be dragged from my room by force as a child to get a surgery, crying all the way</end quote></div>
I think, in general, I would like to avoid my child going through that.
<div class="FTQUOTE"><begin quote>I'm not arguing that people should CHOOSE to have children with CF, but that they shouldn't decide not to have children because there's a chance to have one.</end quote></div>
Obviously, you and I are at a total impasse. There's no pain or missing anyone in not exsisting, you never knew them. We totally disagree, and that's fine, but you'll not be able to convince me that willfully playing roulette with a kid is ethically okay.
My daughter has never cried and asked to stop because she is in pain.
<div class="FTQUOTE"><begin quote>I remember having to be dragged from my room by force as a child to get a surgery, crying all the way</end quote></div>
I think, in general, I would like to avoid my child going through that.
<div class="FTQUOTE"><begin quote>I'm not arguing that people should CHOOSE to have children with CF, but that they shouldn't decide not to have children because there's a chance to have one.</end quote></div>
Obviously, you and I are at a total impasse. There's no pain or missing anyone in not exsisting, you never knew them. We totally disagree, and that's fine, but you'll not be able to convince me that willfully playing roulette with a kid is ethically okay.
"it is better to live than not live"
So how many unknown lives have you not let come into this world. If that is what you truely believe, then you needed to start having children as soon as your body was able to reproduce, as frequently and as often as possible, with every partner you have known. How many oppurtunities to bring a life into this world have you passed up? Your obviously not living up to this statement.
All I am saying is when you choose to bring a life into this world, you should not automatically saddle them with this disease (and yes I think taking the 25% or 50% chance is choosing CF). If you know the risk, there are options out there to prevent your child from suffering this fate. And to repeat a thought that has already been said, if you are never born, you don't miss living.
So how many unknown lives have you not let come into this world. If that is what you truely believe, then you needed to start having children as soon as your body was able to reproduce, as frequently and as often as possible, with every partner you have known. How many oppurtunities to bring a life into this world have you passed up? Your obviously not living up to this statement.
All I am saying is when you choose to bring a life into this world, you should not automatically saddle them with this disease (and yes I think taking the 25% or 50% chance is choosing CF). If you know the risk, there are options out there to prevent your child from suffering this fate. And to repeat a thought that has already been said, if you are never born, you don't miss living.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
"it is better to live than not live"
So how many unknown lives have you not let come into this world. If that is what you truely believe, then you needed to start having children as soon as your body was able to reproduce, as frequently and as often as possible, with every partner you have known. How many oppurtunities to bring a life into this world have you passed up? Your obviously not living up to this statement.
All I am saying is when you choose to bring a life into this world, you should not automatically saddle them with this disease (and yes I think taking the 25% or 50% chance is choosing CF). If you know the risk, there are options out there to prevent your child from suffering this fate. And to repeat a thought that has already been said, if you are never born, you don't miss living.</end quote></div>
That's not choosing CF. Saying "I want a child with CF" is choosing CF. Anything else is inaccurate.
My argument is for those that want to raise children of their own. It is painfully obvious most people want to have their own children with their own partner or else there'd be no one to adopt since every child would be adopted already. Just like I want no child, some don't want to adopt. I don't see what's difficult to understand about that. So when you want a child of your own, what's wrong with choosing the risky route? That's your only choice to have a child naturally. It is not like people with CF are abominations that live non-stop misery, their lives are worthwhile just like everyone's else.
"it is better to live than not live"
So how many unknown lives have you not let come into this world. If that is what you truely believe, then you needed to start having children as soon as your body was able to reproduce, as frequently and as often as possible, with every partner you have known. How many oppurtunities to bring a life into this world have you passed up? Your obviously not living up to this statement.
All I am saying is when you choose to bring a life into this world, you should not automatically saddle them with this disease (and yes I think taking the 25% or 50% chance is choosing CF). If you know the risk, there are options out there to prevent your child from suffering this fate. And to repeat a thought that has already been said, if you are never born, you don't miss living.</end quote></div>
That's not choosing CF. Saying "I want a child with CF" is choosing CF. Anything else is inaccurate.
My argument is for those that want to raise children of their own. It is painfully obvious most people want to have their own children with their own partner or else there'd be no one to adopt since every child would be adopted already. Just like I want no child, some don't want to adopt. I don't see what's difficult to understand about that. So when you want a child of your own, what's wrong with choosing the risky route? That's your only choice to have a child naturally. It is not like people with CF are abominations that live non-stop misery, their lives are worthwhile just like everyone's else.
Its not your only choice to take a risk. You can do IVF with PGD and only implant embryos that do not carry the CF mutation. If you really feel the need to pass on your genetics there are options out there other than adoption. And have you considered the cross contamination that was posted previously?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Its not your only choice to take a risk. You can do IVF with PGD and only implant embryos that do not carry the CF mutation. If you really feel the need to pass on your genetics there are options out there other than adoption. And have you considered the cross contamination that was posted previously?</end quote></div>
And what about those that think an embryo is a living life that shouldn't just be thrown away? I guess people aren't allowed to have religious beliefs these days. And I don't know what cross contamination is.
Its not your only choice to take a risk. You can do IVF with PGD and only implant embryos that do not carry the CF mutation. If you really feel the need to pass on your genetics there are options out there other than adoption. And have you considered the cross contamination that was posted previously?</end quote></div>
And what about those that think an embryo is a living life that shouldn't just be thrown away? I guess people aren't allowed to have religious beliefs these days. And I don't know what cross contamination is.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Anyway, I get the feeling your just here to argue, not really try to learn/understand anything.</end quote></div>
I really dislike nonsense like this. There is nothing to learn or understand when debating one's own morality. I have already thought this through ages ago. I disagree with people here so I don't understand it? Then I can use that too, if you disagree with me, you just need to learn/understand.
Anyway, I get the feeling your just here to argue, not really try to learn/understand anything.</end quote></div>
I really dislike nonsense like this. There is nothing to learn or understand when debating one's own morality. I have already thought this through ages ago. I disagree with people here so I don't understand it? Then I can use that too, if you disagree with me, you just need to learn/understand.
I have been reading this thread and just want to make this comment. I have cystic fibrosis and am quickly approaching the age of 50. I have had my share of surgeries, hospitalizations, medical procedures etc... I also have been married to a wonderful man for many years and have been blessed to have given birth. I thank God for the gift of life everyday. And I thank my parents for choosing to have me. Yes, they chose to have me because I am their second child with cf. I know that my husband and children, who wouldn't have been born if I wasn't, thank them too. I do not feel saddled with this disease, and the <b>quality</b> of my life is excellent. I judge <b>quality</b> not by how well I breathe but what I do with each breath I am blessed to have.
I'm feeling old reading this thread (lol, folks, before you say it, I know that's because I AM old). I still can't quite believe that there are genetic tests for so many things now. My late husband's family (and mine - but even more so his) has had stuff running around in the genes for generations. Sometimes folks have suffered a lot and died young and sometimes they've lived longer.
I'm real glad his family kept on breeding. He was the joy of my life - and a real plus in a lot of other people's lives. And he has great kids and grandkids. Some of them probably have some of the stuff and some probably do not. It's a crap shoot in some cases (no tests for some things yet)
But I know that if there had been tests when he was conceiving kids he would have taken them and paid attention to the outcome before making a decision. And if his religion told him that was wrong he would have figured that he had the moral sense to make his own decions about that and that his church was just taking a long time to catch up with him.
But having said that. Whether or not to marry (legally or any other way ). Whether or not to have kids. Can hardly think of more personal decisions. Personal decisions that only each of us can make - and that we could disagree about.
I applaud anyone doing the research tho before making these decisions. They are way too important to make knee jerk.
I'm real glad his family kept on breeding. He was the joy of my life - and a real plus in a lot of other people's lives. And he has great kids and grandkids. Some of them probably have some of the stuff and some probably do not. It's a crap shoot in some cases (no tests for some things yet)
But I know that if there had been tests when he was conceiving kids he would have taken them and paid attention to the outcome before making a decision. And if his religion told him that was wrong he would have figured that he had the moral sense to make his own decions about that and that his church was just taking a long time to catch up with him.
But having said that. Whether or not to marry (legally or any other way ). Whether or not to have kids. Can hardly think of more personal decisions. Personal decisions that only each of us can make - and that we could disagree about.
I applaud anyone doing the research tho before making these decisions. They are way too important to make knee jerk.