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

[julie]

dcgal. I'm not one for segretating this board, I actually hate it when people say, "well maybe the families section would be more fitting for you" so I can't believe I'm even thinking this... but maybe that would be better for you at this moment. I am not trying to be rude and sincerely hope I don't come across that way to you at all. It's just that this is a frank discussion that has gone quite off topic, but Chantel has gotten the answers she was looking for.

I'm not looking to perpetuate it, but I did feel the need to come to Allie's defense in this one. As you can see, she lost her husband too, just a little over a year ago. Everyone's coping mechanism is different.

<b>I am very sorry for the loss of your husband, I can't even begin to imagine how hard that was for you and I'm glad you have found this forum (we are like a family though, and these fights DO happen!).</b>

I am the type of person who would rather have someone like you be frank with me about those end times, than sugar coat them. Not everyone can handle the gruesome truth, or maybe it's just not quite the time for them yet. Everyone will get there in due time. But as you can see from reading in what's gone on in this thread, some are relieved to hear and express the truth, others are offended, others get scared and put up walls and pretend it doesn't exist... we are all different.

The thing is, this is an adult forum. No one is to be excluded, but if you can't handle the heat, it's best to get out of the kitchen. Discussions like these WILL NOT cease to exist in the adult section of this website, they just won't. However, the family section does not have heated topics like this, and that's better because parents of young children are often aware of the "darkness" of the end, but they prefer to focus on the young life and deal with that darkness later. Nothing wrong with that, but just remember which forum you are in.

I hope that makes sense...

 

[anonymous]

Has anyone in this topic even said "CF isn't that bad"? Right, I didn't think so. Even as terrible as it is, how many people with CF here would have rather not been born? I bet none would say that, and yes it IS because they're "already alive", but future children with CF would be just the same way, why would it change? And they would have it easier than current CFers due to development of new treatments. Can you only live a happy life when your loved ones die in their 60s and 70s from heart attacks, strokes, and cancer? Yes of course those are lovely ways to go, right? Maybe dying of Alzheimer's somehow spares the pain? Maybe gruesome photos of how people normally die would cause people to never want children no matter what? Or is it that when someone is old and wrinkled their death just isn't as sad or meaningful? Maybe we've just gone back to the "more years makes life worth living" argument. It can't be escaped, so all it boils down to is what you judge to be a worthwhile and happy life. Do people with CF live worthwhile and happy lives? Will anyone here say no?

-Agent X

 

[Lilith]

Congratulations, "Agent X", on once again missing the
point of everything said thus far.  You refuse to grasp any of
what has been said that is against your point, and like others, I
seriously think you are just here to argue.<br>
<br>
There is no point in listening to someone who will not listen to
you, especially when you yourself don't even have the disease.
 Not that those who live and love CFers don't go through any
pain (look at Allie if you want an example of that), but until you
get to the point where you can't even breathe or climb one flight
of stairs, or have tubes sticking out of you hooked up to machines
just to keep you alive, you cannot grasp this disease
fully.  You go on believing whatever you want, I no
longer care.  But when CF becomes much more wide-spread,
affecting 1,000,000 people instead of just 30,000, I hope you look
back and think about what's been said here.

 

[anonymous]

Thank you dcgal. Peace for you and your son. I think the problem is we're all too emotionally vested in our own perspective (for very good reasons.) I think it's hard for some parents to seperate "not planning a child who could have cf" from saying their current child's existence is not worthwhile. It's nice to see someone else who can actually <i><b>see and appreciate </b></i>the worth and validity of both sides.

This is purely a hypothetical, for sake of debate question. (Disclaimer: I actually fall on the side of the fence that believes you should not conceive knowing there is a high likelihood the child will inherit a fatal, genetic disease <u>although I do not personally think it's my right to police, or judge, other's actions</u>.)

Ok, the question: If you believe that it's wrong to have a child when you know there's a significant chance the child will have an inheritable condition, at what point do you draw the line? Specifically, do you draw the line at an inheritable condition like cf that causes premature death? If so, what do you define as premature, 10 yrs? 20 yrs? Here's the scenario: From our allergist, if 2 parents have asthma/allergies, there is an <i><b>80%</b></i> chance any offspring will have asthma/allergies. Now, NO asthma and allergies are not generally fatal; however, they can be. An individual with severe asthma has a shortened life span as compared to a healthy individual. Some allergies can be fatal. What about Crohn's disease? Genetic predisposition for diabetes? The list goes on. I'm just wondering where everyone's line is? Not sure on myself...
Cheers!

 

[2005CFmom]

Well, let me start off by saying....opinions are like a$$holes, everyone has one and they all stink.
So now it is my turn to stink up this thread. (Gotta get some laughter in here somewhere!)

I guess this topic just proves the fact that some peoples brains are just wired completely differently than others.

I don't think that there is one person on this board who is not hoping for a cure to this disease (or atleast better treatments), infact many of us try to raise money for this cause. It just seems so incongruent that out of one side the mouth someone can solicit help in ending this terrible disease; and out of the other they can say it is okay to take a 25% to 50% chance in creating another person to suffer through it. It just does not make sense.

If I had known we were carriers, we would have adopted.....it's that simple. And if Sarah was diagnosed before Emma was born, either Sarah would be an only child, or we would have adopted more kids. It doesn't mean that I would give up my daughters NOW. I KNOW them and love them and wouldn't give them up for the world and could not imagine life without them.

If circumstances were different and they were never born, would I miss them? No. As someone pointed out, how can you miss someone you don't know? I would be singing the praises of my adopted Children. And would be saying how thankful I was that I made the decision to adopt them because I could not image
life without them.

But I guess that is just how my brain works.....It just seems so simple to me.


To change to subject just a bit....I like honesty posted here: the good, the bad, and the ugly. No one will do me any favors by trying to soften up the truth for us newbies. Can it be a bit harsh sometimes? Yes, but that is the reality of this disease. I don't come to this site to feel all warm and fuzzy, I come here to get the truth about CF. So please keep the truth coming, no matter how harsh it my seem.

 

[miesl]

Truly, you fail to understand the basic concept.

CFers have worthwhile lives because they make the best of what they have. Note the present tense. It is already done. Cannot be changed or prevented.

Future CF patients are not relevant. Egg has not yet met sperm and had a party in the uterus, they are not real, they do not exist. They will not "miss" being alive, or "miss out" on a life because there is not one for them to miss. It fails to exist even before it began.

There is no logical argument here. You are trying to appeal to emotion as evidenced by your statement of "how many people with CF here would have rather not been born?" - this does not have relevance. You have committed a logical fallacy - end of argument, you lose.

 

[CFHockeyMom]

Agnet-X,

Ugh!!!

No one is saying CFers don't live happy lives. No one is saying it's about quantity not quality. No one is saying it's better to die from cancer, heart disease, etc...

What we are saying is that armed with all the knowledge we wouldn't choose to bring a CF child into this world. It doesn't mean that once they are here we don't love them or think they can't experience a full (I'm talking about quality not quantity) and happy life. It means that we understand how difficult CF is and we wouldn't put it on our worst enemy let alone our own child.

I said it before as did others, if you know there's a 25% (or greater) chance of your child having CF and you choose to gamble you are choosing to have a child with CF, whether they actually end up with CF or not is moot.

Now, I did like this argument...

<div class="FTQUOTE"><begin quote>Can you only live a happy life when your loved ones die in their 60s and 70s from heart attacks, strokes, and cancer? Yes of course those are lovely ways to go, right? Maybe dying of Alzheimer's somehow spares the pain? Maybe gruesome photos of how people normally die would cause people to never want children no matter what?</end quote></div>

You got me thinking. Thing is, in general, those diseases are not with you from birth. They don't plague you your entire ~36 years. Instead those diseases typically (with the rare exception of some cancers), allow you to lead a relatively pain free life until the onset. The onset of which is usually well past ~36.

 

[anonymous]

Simply stating I missed points, refused to grasp what has been said, or that I am here to simply argue doesn't make any of those true. What haven't I listened to, or missed? What haven't I grasped? Please, feel free to guide me in the right direction. I mean if someone actually wants to debate my points instead of saying I'm not listening to them then I would be delighted, since it's quite annoying to have people attack you while ignoring your posts. I'm not here to just argue, what an absurd thing to say. If anything, YOU'RE here just to argue, I posted in this topic to defend the decisions of others, you are here to attack them.

CF isn't ever going to affect one million people, let's get real here and out of fantasy land. And even if it did, how many of those million would wish they weren't born? Exactly, it wouldn't change from now, except, as I said, it would be easier for them than it is for current CFers.

-Agent X

 

[JazzysMom]

There will be people who wish they werent born whether its because they were born into poverty, a drug addicted or abusive family or with a chronic illness. There are the ones that pick themselves up from whatever situation & are able to get out. I dont think arguing about this whole issues really makes a difference. Every thought & decision here is still going to be based on the person who has to think it or decide it. Frankly I believe that those that will take the risk will take the risk & those that wont take it wont; those that are bitter about their life (no matter the reason) will always remain at least somewhat bitter & those with a positive outlook with pretty much remain that way. There will be days that this varies because we are human. BUT to go on & on, correcting or trying to get a belief across on such an emotional subject seems redundant (sp?)!

 

[anonymous]

Miesl, are you joking?

Others are using the same kind of argument. "They will live with pain, there will be sadness, WHY subject them to this pain and misery" kind of argument. THEY HAVE TO EXIST TO EXPERIENCE ANY OF THOSE THINGS. There is no debate over non-existing people, it has no basis in reality. So if existing allows them to be worthwhile and happiness, why does the POTENTIAL pain and sadness rule out the POTENTIAL happiness and desire to live? I don't think you know what a logical fallacy is - this entire topic is filled with appeals to emotion.

I wouldn't bring a child with CF into the world. I wouldn't bring ANY child into the world. I still see no moral wrong with giving birth to a child with CF if they are able to have a happy and worthwhile life.

 

[CFHockeyMom]

Anon @ 3:30,

Let's be clear here. There is a significant difference in a genetic condition like CF, parkinson, etc. versus an inherited condition.

Allergies and asthma can also be triggered by environmental factors and may have nothing to do with inheritance. I'd be interested to see your allergists figures as to how he came up with the 80% number.

High blood sugar, high cholesterol, high BP, etc... those are all inherited traits but again not genetic. As such, putting a number to them is difficult/impossible that is why typically they are referred to as traits.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Can you only live a happy life when your loved ones die in their 60s and 70s from heart attacks, strokes, and cancer? Yes of course those are lovely ways to go, right? Maybe dying of Alzheimer's somehow spares the pain? Maybe gruesome photos of how people normally die would cause people to never want children no matter what? Or is it that when someone is old and wrinkled their death just isn't as sad or meaningful?
-Agent X</end quote></div>

Cancer is a b*tch, but not 100% hereditary. Strokes and heart attacks suck too, but those don't *generally speaking* suck up your whole life. You have CF from day one, you fight CF from day one, you suffer from day one. If you have a heart attack at 60 and croak... well hell, you lived to be 60 with no problems at all!! That doesn't mean you have no right to complain, but you lived 60 healthy years. That's pretty d*mn good.

I may be entirely jaded, but when an OLD (I mean old, like my grandmother, 92) person is dying and they b*tch about it, I can't quite sympathize. Yes, you're sick now... but you're not on chemo, you don't have Alzheimer's, you don't have cancer or AIDS. On top of that, you lived a healthy life for some.... 85+ years, you were married for 50+, you had two children and five grandchildren. It sucks to die but when a person has had a full life, I don't see it as much of anything more than "their time" coming. It'll be sad when my grandmother dies sure, but I wouldn't call it tragic. She, as I said, had a very full life. I'd kill to have a 50th wedding anniversary, and see grandkids. (Just for your information, my family has quite a wide array of diseases floating around, so I've seen a bunch... cancer [my grandfather and my grandma], Alzheimer's [my grandfather], the CF [only that's just me], Parkinson's [my dad], heart disease [my grandma], bleeding disorders [my sister], brain tumors [cousin], massive strokes [uncle], etc etc... I've seen a lot --- <i>Oh and I might add from Mike's family because I consider them family as well... epilepsy [his cousin], an as yet undiagnosed muscle/connective tissue disorder {she's been tested for frickin everything} that leaves her in a wheel chair permanently [another cousin], 8 years worth of fighting breast cancer and then dying anyhow [his grandma]</i>).

<div class="FTQUOTE"><begin quote> Maybe we've just gone back to the "more years makes life worth living" argument. It can't be escaped, so all it boils down to is what you judge to be a worthwhile and happy life. Do people with CF live worthwhile and happy lives? Will anyone here say no?</end quote></div>
More years don't make life worth living. I will however say, that it'd be much nicer if I could expect to see any children I might have (if I'm lucky) graduate high school... maybe even get married. I have a worthwhile and happy life. I love my fiance more than anything, we have a wonderful relationship. Do I wish I could stick around longer so as to spare us both pain? Spare him the pain of watching me die? The pain of taking care of me while I die? Spare me the pain of watching him watch me die? Watching him do EVERYTHING around the house and outside of it, because I can't breathe long enough to walk across the room? Of course. Anyone who doesn't wish they could avoid these things confuses me greatly.

I find that my life is absolutely worth living, and I will live it to the best of my ability until I can't. But if my Mike could have me minus all that, would I take it? You bet your @ss I would. Now that's a useless argument, because I wouldn't be who I am now without the CF. There's good and bad in just about everything. With CF, the main good is that it's made me who I am. So it's really quite impossible to argue the "If I could be here but not have CF" because that wouldn't be me as I know me today. It's really useless, to me, to argue for people that don't yet exist. I'm not saying "never have kids because of what might happen." I'm saying "think twice before you have kids and you know you've got a 50/50 chance of giving them a disease that sucks balls." In that case, if they do think twice and perhaps... adopt, instead... then they're not KILLING a child that once existed. And they're still having a child that can be happy and healthy.

As much as you may try, it makes no sense to me (and others, I believe) to argue for hypothetical people that don't yet exist. It's also equal nonsense, to me, to argue for retroactive abortion. I'm not sure exactly how far you intend to take this argument, but just to clarify... I also never said "Let's kill all the CFers now because their lives are hard and not worth living." We're here and you can't argue for "Well, should your parents never have had you?" because <b>we're here</b> (hah, Poltergeist). If I was standing outside of it and knew my parents carried CF and knew what the risk was, I'd tell them to adopt. I'd tell them not to have had my sister too (she's younger, but this was before they identified the CF gene, and I might add, she doesn't even carry it). It just doesn't make sense to perpetuate that hard life by having more kids with it, if you know the risk.

 

[Allie]

My younger brother has severe asthma, and actually considered not having children because of it. His wife has no history of asthma and allergies, so they asked thier doctor what he thought, and decided to go ahead and get knocked up. So far, so good, but they are thinking about adopting thier next one. Not because of asthma, really, the risk is relatively low, but they think it's a good thing to do. But yes, some people with severe asthma really think about thier choice. He also takes great pains to expose his son to things so he likely WON'T develop asthma.

 

[lightNlife]

Some sort of sick fascination keeps me coming back to this thread.
It's like a car wreck--you know it's gruesome but you still have to
look.<br>
<br>
May I make a suggestion?Newcomers  who may stumble upon this
particular thread based on its topic as it appears on the main page
may be very misled and confused by the content of the posts
herein.<br>
<br>
Maybe it's time to begin a new forum topic where these issues can
continue to play out. The basic question posed at the beginning has
been answered. Personally, if I had a question as to the statistics
of genetics or the like that I would have Googled it or looked it
up by some other means instead of posting it to this forum where
everybody and their fish could respond with all flavors of
ignorance. <br>
<br>

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Simply stating I
missed points, refused to grasp what has been said, or that I am
here to simply argue doesn't make any of those true. What haven't I
listened to, or missed? What haven't I grasped? Please, feel free
to guide me in the right direction. I mean if someone actually
wants to debate my points instead of saying I'm not listening to
them then I would be delighted, since it's quite annoying to have
people attack you while ignoring your posts.</end quote></div><br>
<br>
Uh, if I was ignoring your posts, I wouldn't have replied.
 And I'd like you point out that you are just as much a guilty
party as anyone here when it comes to attacking.  Also, all of
your points have already been debated in several other posts,
therefore I feel no need to go over them a thousand times
again.<br>
<br>
<div class="FTQUOTE"><begin quote>I posted in this topic to defend the decisions of others, you
are here to attack them.</end quote></div><br>
<br>
Wrong.  In my first reply to this post I CLEARLY STATED THAT
IT WAS MY OPINION ONLY!!!!  Go read it again if you're not
sure, and I sympathized with the original poster about her feelings
on this topic.  The attacking came in when my view was
assaulted.  I don't let sleeping dogs lie when the dog's
already bitten my foot.  Sorry.<br>
<br>
<div class="FTQUOTE"><begin quote>CF isn't ever going to affect one million people, let's get real
here and out of fantasy land.</end quote></div><br>
<br>
You are the one living in fantasy land if you think that, if people
continue breeding this disease, it won't become widespread.
 Maybe not a million people, that was hypothetical to make my
point.  But perhaps you're right, maybe it will stay at
30,000, considering the death rate...<br>
<br>
<div class="FTQUOTE"><begin quote>It would be easier for them than it is for current CFers</end quote></div><br>
<br>
Newsflash:  I've been doing the same treatments for 20 years
with no change.  New medicines aren't churned out like butter.
 You don't get one every year.  We just now got HS, which
is nothing but salt water!  And even with the developments
they've found, they won't be on the market for years until they are
tested, first through animals and then on human subjects.
 Feeling its okay to pass CF on (considering the fact that you
have OTHER OPTIONS) just because there might be new meds is
okay?<br>
<br>
And for the love of god, no one is saying that they would have
rather not been born!!  Where do you keep pulling this from?!
 Just because some of us think its a bad idea to spread a
lethal disease does not mean we're suicidal!!  One has nothing
to do with the other!!<br>
<br>
Now, with all that said, I expect you'll come back to attack me
again...and again...and again...  I don't expect you to see
things my way, never have.  But if you want me to respect your
opinion, you have to give me the same respect, which you haven't
thus far.  Its that simple.

 

[anonymous]

Emily, too many arguments are being invoked and it goes back and forth to the point of not making any sense. Ok so CF DOES cause miserable lives? I thought it was agreed the lives were worth living. No one is saying CFers lives aren't harder, they certainly are, but hard to the point of not worth living? I used those other forms of death because the discussion went to "well, just wait until YOU see someone die from it", well the majority of deaths are no more pleasant. So I guess we're back to quality of life then? I've already discussed quality of life and what I think is worthwhile. Maybe I'm just more optimistic.

If CF causes so much trouble, how can anyone have a happy life with it? To me none of this makes sense, it's not like misery itself is being brought into the world. People die horrible deaths and they may not be genetic, but they are just as probable as CF. I have a higher chance to die from cancer or heart disease than anything else. Is it guaranteed? No. Not everyone with CF is guaranteed to live a certain number of years or die from a particular cause, which is my point. Some people with CF may even outlive me. There are no guarantees, I'm not advocating people specifically try to have a child with CF, just that I don't see any MORAL wrong with having a child with CF when that life will be worthwhile. What is wrong with creating a worthwhile life?

-Agent X (3:44 was me too, forgot to sign my secret spy name)

 

[CFHockeyMom]

Ok, I got this one...

Because, no parent wants to see their child suffer. Duh!

 

[anonymous]

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

Ok, I got this one...



Because, no parent wants to see their child suffer. Duh!</end quote></div>

It's morally wrong because no parents want to see their child suffer? I wish that made sense. Are you saying parents that DO choose to have a child want to see their child suffer? Worthwhile and happy doesn't mean suffering. There is suffering but as a whole, it's been said the lives are worthwhile and happy. Let's be consistent here atleast. If the point of the topic is to educate parents on what CF does, fine, but I hardly see that as the case.

-Agent X

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
What is wrong with creating a worthwhile life?
-Agent X (3:44 was me too, forgot to sign my secret spy name)</end quote></div>

Why create a worthwhile life that will be harder (you said so yourself) when you can use another option and create a life that may be CF-free or adopt a child that already exists and needs a home?

It's so hard to argue your point, partially because it's a good point. But also because it goes back to what I said, you can't really argue for me not living my life, claiming it's too hard... when I'm already here. These hypothetical children aren't yet here. So you can't as easily argue for them. You can't ask me "Isn't your life worth living?" and have that be an argument for having more CF children. The two aren't parallel. I'm already here, I'm happy, of course I'll say I want to live my life. Would I be happier if I didn't have CF breathing down my neck? Oh, probably. I love Mike and he makes me as happy as a pig in pooooooo. But that doesn't mean I never think of what he's setting himself up for, in attaching himself to me.

If you have two as of yet, unborn (so as to create no further arguments, let's even say unconceived) children. Baby A will have CF. Don't ask we know, we just do, for sake of argument. Baby B does not. They both may end up with AIDS or cancer... or SARS or the bird flu. They both might get hit by a plane or a bus. They both have that equal risk. Why choose to bring a baby into the world that has CF AND all of those other things hanging over his/her head? Why not go for Baby B and hope for the best? Yes, you can have a CF child and hope for the best. But hoping with CF will only get you so far before you fall flat on your face, in 90+% of cases. If we are discussing two non-existing <i>hypothetical</i> children that don't have names or parents or lives, I don't see how you could make an argument that it makes just as much sense to have Baby A as it does Baby B.

 

[anonymous]

Really Lilith, treatments aren't churned out every year? I do research on proteins for a living, you don't have to explain to me the timeline of research. Obviously revolutionary treatments aren't made every year, but compare the average lifespan now to 20 years ago. I would be willing to wager a lot of money that decades from now CF will have more treatments and a higher median lifespan. There is no reason to believe otherwise. There is new research on it all the time, it's this very research combined with upcoming technologies that will allow for better treatments.

If I went into a topic about race and made a racially charged "opinion" it can still be taken as an attack. Sorry, but statements don't have to be facts to be an attack. If you only said "I wouldn't do it myself", that's different from someone saying they think it's selfish and wrong for someone else to do it.

-Agent X