Stats on People with CF and Carriers having Children with CF?

[chantelfox]

ok...so this thread has officially left the building...and since my
question was answered ohh...some 130 posts ago..I think it's time I
go with it out that door. Plus, my head is spinning, because I
cannot keep track of whose saying what....<br>
<br>
Thanks for all the great info and the sharing of experiences.
That's really all I was asking for.  I would like to ask
 a few rhetorical questions/ thoughts since these
popped into my head as I read MANY posts about not bringing a child
into the world if there is a possibility of having CF.<br>
<br>
1. I read somewhere that someone said if you have a genetic disease
you shouldn't bring a child into the world. FORGIVE me it I have
misunderstood, but holy crap...talk about creating a "super
race". There are MANY genetic diseases that kill young. So if
a parent has/had cancers, leukemia,  MS, diabetes, severe
asthma, heart disease, kidney disease..etc. Should all those
millions of people not have biological children or have IVF
instead? Sure the probability may not be 25%, (it may.. I don't
know the stats on inheriting genetic diseases), but it still
exists.<br>
<br>
2. I read one person who said they adopted, only to find her
adopted child ended up having CF. So, adoption may not be the
"cure all". It's not like you can know exactly how a
child is going to genetically develop, especially if you adopt and
know nothing of the parents.<br>
<br>
3. Someone said that having a child despite the 25% chance of
having a child with CF after you are made aware of the possibility
would make a person selfish. Well in that case, I am D*MN glad my
mom and dad  are selfish people who chose to have two more
kids, because I love my little brothers dearly. (FYI..neither
of them have CF).<br>
<br>
***DISCLAIMER****DISCLAIMER****DISCLAIMER!!!!<br>
Hopefully I will not offend ANYONE by my questions/comments. They
are just some thoughts that popped into my head as I was reading
all the posts.  They are my own thoughts and are not meant to
be directed negatively toward anyone in particular. In fact...I
chose not to even try to find who said what..because that would be
pointing the finger and that's not my intent...<br>
<br>
So take care all...thanks for all the advice and help. I will
continue to investigate my options. Like I said in one of my first
posts, I still pray to God that my future husband is not a carrier
and that's all I can do for now, besides arm myself with
information.<br>
<br>

 

[Emily65Roses]

Chantel, not offended. Haha.

1. Super race, no way. Not a descendant of Hitler, despite being German. Just arguing that if you've got something like a 50/50 chance (on the chance that your boyfriend is a carrier), it's not quite the same as doing it with unknown factors, unknown percentages, etc. Oh and avoiding CF if possible has nothing to do with creating the "perfect race," but simply, in my mind, sparing a child undue pain. <img src="i/expressions/face-icon-small-smile.gif" border="0">

2. Of course not. Again, it's a matter of chances. An adopted child with CF is a lot less likely than something like a 50/50 chance.

3. Things are different now. When your parents and mine had our siblings, they didn't know what gene caused CF yet. There was no test, there was no PGD, etc. And it's so difficult to argue people that are already alive. Some of the responses seem not to understand that. We can't argue whether or not your parents should've had more kids, because your siblings already exist. We can't argue that your parents never should have had you, or my parents should never have had me. WE ALREADY EXIST!! I'm not yelling at you... more so to the people who don't seem to get that argument. lol Arguing in the face of someone who is living, breathing, and 20-some odd years old is much different than arguing over non-existant HYPOTHETICAL people. Kay then.

One more thing:
<b>I'm going to make this very simple. Anon, leave your name or shut up.</b>
While I'm at it, you can argue from a religious stand point, but not everyone is going to buy into it, myself included. Just know that when you walk in spewing religious reasons, they're not going to quiet me down any. One needs to have a secular argument for me (I'm saying me personally, but I imagine there are others) to consider it a level playing field worth debating on.

 

[Emily65Roses]

There were more than one anonymous, one was speaking religiously. Whether it was you or not, that's where that statement came from. I don't need your full name and address, but if you're going to leave more than one post, you should sign them something, so we can tell you apart. Sign them "Agent X" for all I care. Otherwise, you're just squished in with all the other anonymous idiots. And you can't blame anyone (myself included) when we lump you in with the other imbeciles, because we have no way of telling you apart.

If you don't think I have ANY valid points, then you should reread them. I'm not a moron, and despite being opinionated, I'm not quite as thick-headed as you may think. I value arguments that have merit, even if they *gasp* disagree with me. They have to have MERIT though, and some of the anonymous garbage I read was just that... garbage. If you'd like me (or anyone) to tell you apart from the braindead, then I suggest you leave some kind of moniker. Either that or don't complain when I group you in with the fools.

 

[anonymous]

I don't see any fools in this topic. If someone wants to make a religious argument there isn't anything necessarily wrong with that. I don't believe in any religion, but remember, we're talking MORALITY here, not laws. If religion impacts someone's morality then how on earth is it foolish of them to invoke it if it's their lives and not yours? Anyway, there was an anon post by someone with CF that pretty much proves my point, and proves CFers like them and my partner are very glad they weren't chosen against. If a CFer is glad they weren't chosen against, why choose against them? It is perfectly legal for those with the CF gene to have children, so if you're going to attack the morality of it and those that choose to do it, you shouldn't require it to be based on what YOU find valid or not, rather what THEIR morality is, religious or secular. It's just common sense.

-Agent X

 

[Emily65Roses]

I didn't say religion = foolish. I said there were fools.

Religious arguments have merit and are valid to those that argue them. For me personally (as I said), they don't. Not that they can't base what they do on X Y and Z because of god blah blah (<b>I</b> don't drink because my religion says not to). But if they want to argue an actual point and why it's right or wrong (abortion, stem cells, gay marriage, whatever, you name it), that particular person won't get anywhere with me. In order for me to play the game, we have to meet on a level field, as I said. There's nothing wrong with using religion for one's own purposes, and it doesn't make them stupid. But that's a not place I'll go.

The only thing I really meant is that if one intends to debate with ME <i>specifically</i>, one cannot intend to use religion and have it get them anywhere. And as I said, that means why things are right or wrong, not why things are right for the individual. <b>What's right for the individual is not my business, no matter the reason. But if we're discussing, for instance, why abortion should be banned, that's not the individual, that's everyone, and that's where religion will get you nowhere with me.</b>

 

[anonymous]

I agree with you, religion shouldn't in debates over law. But I sure hope no one in this topic is advocating actually outlawing those with the CF gene from reproducing are they? I doubt it, so someone's own morality to defend what they believe in is valid. It's not they that're saying you're doing something wrong and selfish, it's you that's saying they are. So why can't they use their own morality to defend themself? They don't exactly have to argue against you if they want a child, but if you attack them then they should be able to defend their actions, which I don't find immoral at all.

-Agent X

 

[Emily65Roses]

I don't believe I once said "wrong" or "selfish." If I did, prove me wrong and copy it. I was simply stating how I felt on it, as everyone else was doing.

 

[anonymous]

Sorry Emily, I think I confused you with another poster.

-Agent X

 

[Emily65Roses]

No prob Bob.... X.

Second thought, I shall also include an apology. "Shut up" is a <i>tad</i> 3rd grade. I got overwhlemed with frustration trying to tell one anonymous from the next. It's impossible to have a conversation with someone when you don't know who's saying what. I'm not 100% unreasonable, but I'll admit in two seconds to having a terrible temper.

 

[littledebbie]

Okay so since I have been watching this thread for 2 days and
reading...and reading....and reading.  I now feel compelled to
chime in....sorry to perpetuate the thread.<br>
<br>
1. Chantelfox: sorry I don't have any idea what the stats are on a
CFer and carrier having children and possibly a child with CF.
 And I'm now responding in your thread to totally OFF the
thread topic issues.  Apologies <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
2.  CF and poverty? Give me a break (laughed til I coughed).
 Ever heard the saying "at least you have your
health"?  That's what they tell poor people.....so they
feel better!!!!! But like Allie mentioned we have had that argument
on here before and why rehash it?<br>
<br>
3. CF...to live or not to live.  Whom ever stated we're not
talking about killing off those of us who are already here but
rather preventing further generations of CFers...pretty much nailed
it.  I am with Lilith (Lisa) and Emily etc.  I make the
best of my life but you bet your butt my family members better be
tested and NOT roll the dice on this.  This is not about
number of years or lifes little trials we all face in one way or
another.  A big part of my life has been
...well...traumatizing.  Does that sound too dramatic...it
might I just can't find a better word.  Life is hard...very
hard...for everyone...so if you can avoid this if you can do IVF
(or whatever the initials are) or adopt....why not?  I know
there's still a chance your child will have CF or whatever but at
least you tried..you did your best.  Isn't it a parents job to
protect their child?  So why isn't this just protecting your
child before they are conceived?<br>
<br>
Well those were just my most pressing thoughts.  I know this
thread got off topic but I thought it stayed very civil all in all
and sometimes I think our most interesting exchanges occur when
things veer off topic a bit.  I love you guys......<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[damiensmom]

people have the right to feel how ever they want to and to tell someone there feelings are total crap is total crap.so save it. I understand wanting biological children. I personally enjoy seeing Rays eyes every time I look at Damien and the personality traits that are clearly genetic. I also would love to give a child a mother who needs one and would enjoy all the rewards that doing so give. Both circumstances have there own rewards. And there are lots of women who are mothers who have C.F. Life is full of sacrafices and your life is your own. Carpe Diem. (seize the day)

 

[anonymous]

I Didnt read all the posts and now that I did I have to say to Allie you suck if that makes me a bitch so be it I llove Damien and if I knew TOday He would have cf I would still do it. Have you always been such a high and Mighty whitch or did this just come about? sorry you are greiving but thats no excuse to be such a narcassist. I truely hope you find some peace in your heart. You are no better than anyone nor are your opinions, feelings,or thoughts miss maam. Try to spread some love.

 

[anonymous]

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

ok...so this thread has officially left the building...and since my
question was answered ohh...some 130 posts ago..I think it's time I
go with it out that door. Plus, my head is spinning, because I
cannot keep track of whose saying what....



Thanks for all the great info and the sharing of experiences.
That's really all I was asking for.  I would like to ask
 a few rhetorical questions/ thoughts since these
popped into my head as I read MANY posts about not bringing a child
into the world if there is a possibility of having CF.



1. I read somewhere that someone said if you have a genetic disease
you shouldn't bring a child into the world. FORGIVE me it I have
misunderstood, but holy crap...talk about creating a "super
race". There are MANY genetic diseases that kill young. So if
a parent has/had cancers, leukemia,  MS, diabetes, severe
asthma, heart disease, kidney disease..etc. Should all those
millions of people not have biological children or have IVF
instead? Sure the probability may not be 25%, (it may.. I don't
know the stats on inheriting genetic diseases), but it still
exists.



2. I read one person who said they adopted, only to find her
adopted child ended up having CF. So, adoption may not be the
"cure all". It's not like you can know exactly how a
child is going to genetically develop, especially if you adopt and
know nothing of the parents.



3. Someone said that having a child despite the 25% chance of
having a child with CF after you are made aware of the possibility
would make a person selfish. Well in that case, I am D*MN glad my
mom and dad  are selfish people who chose to have two more
kids, because I love my little brothers dearly. (FYI..neither
of them have CF).



***DISCLAIMER****DISCLAIMER****DISCLAIMER!!!!

Hopefully I will not offend ANYONE by my questions/comments. They
are just some thoughts that popped into my head as I was reading
all the posts.  They are my own thoughts and are not meant to
be directed negatively toward anyone in particular. In fact...I
chose not to even try to find who said what..because that would be
pointing the finger and that's not my intent...



So take care all...thanks for all the advice and help. I will
continue to investigate my options. Like I said in one of my first
posts, I still pray to God that my future husband is not a carrier
and that's all I can do for now, besides arm myself with
information.</end quote></div>


<b>Chantel</b>--I think it is wonderful that this forum exists for questions like this to be asked but it is too bad that there are some on this thread who could not answer your question in a respectful way. I am not going to quote phrases or names as that would add fuel to the fire. They know who they are and so do all of us who are following this thread. Why do they choose to name call and degrade others because of a difference of opinion? Why can't we just put our thoughts, experiences, and opinions on the table and have a civil conversation? It is precisely because some attacks are so vicious that there are those who choose to remain anonymous. And really, whether one is anonymous or leaves a name, what does it matter? It is the content of what is said that should be evaluated not the person who said it.

After reading your last post, Chantel, I believe that you will do well in what decision you come to. I would hope that everyone wishes you well whether they agree with you or not.


I am the nearly 50 year old cfer who wrote earlier.

 

[wuffles]

This thread actually makes me really sad.

It makes me reluctant to ask questions on this forum in the future. I'm at a time of my life where I am planning for the future and although I understand that people here have strong views on certain issues, I think support is needed more on this forum than ethical or "I-told-you-so" debates. I know I'll be keeping it to myself if I have a question about pregnancy or relationships (I'll stick up for myself, but when my personal values are attacked, it's easier to "stay out of it").

Chantal, as some others have said, follow your heart and head. Educate yourself about options (which is what you were doing with this thread anyway), stick to your own ethics, get your boyfriend tested (with an extended panel if circumstances allow it) and when YOU are ready, make a decision of what is best for you.

 

[kybert]

oh god. the 'cf isnt that bad' crew is back again. im tempted to put 'that' photo up for those who know what im talking about. people need a dose of reality here.

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i> oh god. the 'cf isnt
that bad' crew is back again. im tempted to put 'that' photo up for
those who know what im talking about. people need a dose of reality
here.</end quote></div><br>
<br>
I've noticed that, too.  Isn't it funny how CF is a terrible,
nasty disease UNTIL you start talking about having babies?
 Then all of the sudden its just hunky-dory.<br>
<br>
<div class="messagetext_container"><div class="FTQUOTE"><begin quote><i>Originally posted by:
<b>anonymous</b></i> I Didnt read all the posts and now that I did
I have to say to Allie you suck if that makes me a bitch so be it I
llove Damien and if I knew TOday He would have cf I would still do
it. Have you always been such a high and Mighty whitch or did this
just come about? sorry you are greiving but thats no excuse to be
such a narcassist. I truely hope you find some peace in your heart.
You are no better than anyone nor are your opinions, feelings,or
thoughts miss maam. Try to spread some love.</end quote></div><br>
<br>
Before you bash someone who has offered so much to this forum for
their personal thoughts and feelings, you might want to at least do
it eloquently.  "Whitch" isn't even a word...</div>

 

[CFHockeyMom]

Yeah, we all agree that Chantel's original question has been answered. However, he question and some of the responses took the conversation in another direction. It happens. Why can't some of you accept that?

Now, I have no idea why anon @ 5:43am thinks Allie "sucks" but come on is that really a mature rebutal to an argument/opinion? Like many of us have stated, these are our opinions. We all have basis for our opinions no matter what side we're on. However, simply insulting someone will not sway them toward your side or even provoke thought.

This is a debate people not a war.

 

[Diane]

Kybert, now you have me so curious, what is the photo of? If you'd rather not say on the board , you can send me an email.......... jinxnick@aol.com

 

[NoExcuses]

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

I Didnt read all the posts and now that I did I have to say to Allie you suck if that makes me a bitch so be it I llove Damien and if I knew TOday He would have cf I would still do it. Have you always been such a high and Mighty whitch or did this just come about? sorry you are greiving but thats no excuse to be such a narcassist. I truely hope you find some peace in your heart. You are no better than anyone nor are your opinions, feelings,or thoughts miss maam. Try to spread some love.</end quote></div>


Aria? Is that you?

If so, I hate to say it, but you have NO CLUE about CF when your kid is a little over a year old. You haven't been through the ugly.

Allie speaks from a much more macro view of the disease. She's seen the spectrum of what the disease has to offer. Something that parents of a 1 or 2 or 10 year old haven't come close to seeing.

So I suggest that remove yourself from bashing her but instead take a moment to understand her wisdom. Wisdom that one does not have unless one has seen this disease take someone's life.

 

[NoExcuses]

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

oh god. the 'cf isnt that bad' crew is back again. im tempted to put 'that' photo up for those who know what im talking about. people need a dose of reality here.</end quote></div>

I think that much of the problem is many parents of CFers have a scewed view of this disease. Their kids are young and haven't run into many problems with the disease as of yet.

Fast forward to when their kids are in their 20s and 30s, I think many would have drastically different opinions.