*blinks*

[conuly]

Mostly, I agree with this article. Good stuff. But...

"I got married really young because I really wanted a family," Fisher said, "and I also knew I was going to die young."

Fisher married at 21, had a baby at 22 and was battling breast cancer by 31. She's been in remission for 12 years, but is fighting a new battle.


You have an inheritable problem that predisposes you to cancer. You arranged your life around this. There is no benefit from this, and the odds are that you'll die young. So you got married early to have kids?

Genetic testing revealed that her daughter, Kate, has the BRCA-1 gene, which is associated with colon and breast cancers.

I don't want to say anything I don't mean, so listen carefully. I don't think this woman or her daughter would've been better off, or the daughter (or woman) hadn't been born. I think people need a lot of education about various disabilities before saying "oh, this kid might have *blank*, I should get an abortion". But in this case, she knows the problems involved in this, they're not pretty... *shrugs* I would've adopted, that's all.

Comments

[xmorningxrosex.livejournal.com]

I hear ya. Supposedly this disease I had (have?) is usually fatal if it's "active" in really young kids, so I think before we have kids, we'll have to do some testing if possible to find that out, because I don't want to have a child that might not even make it to 5 because of something painful and sucky, you know? Nothing wrong with adoption!

[latenightparty.livejournal.com]

I wonder what the odds are of her and her daughter getting cancer, though? Who knows, the daughter might've been born without the gene. And even if you do have it, it doesn't necessarily mean you'll actually get cancer.

But yeah, it sort of bugs me that this lady centered her entire life around the fact that she was sure she'd get cancer. She did... but there's a chance she might not have!

[conuly]

Not a great chance, though. That's roughly akin to saying "I'm centering my life around the odds that I'll die, but there's a chance I won't". Okay, I have greater odds of dying than she had of getting cancer, but her odds of getting cancer weren't as low as you're making out.

[latenightparty.livejournal.com]

So were they over 50-50, I wonder?

[conuly]

You want a 50% chance before you'll take precautions against an early death?

The risk of getting ovarian cancer if a woman has a marker for a mutation is 40 percent, Weber said, compared to 1 percent if they are removed. Once a woman gets the cancer, there is an 80 percent to 85 percent chance of dying, she said.

She had, apparently, a 40% chance of getting ovarian cancer. This is in addition to the increased likelihood of other types of cancer.

[rayinte.livejournal.com]

I know what you're saying... I mean, why would anyone who knows they're high risk for cancer want to have kids who will, in turn, be high risk? It doesn't seem fair to the child.

As for the genetic testing aspect of the article... Gattaca anyone? *likes that movie* Anyhow, I take a very very long view sometimes, and I can see how in some ways, genetic screening might be beneficial to the species. You know--culling the herd and whatnot. Sure, privacy is an issue, and no one should be turned down when they need help... and gah, that's where the difficulty lies.

Stephen Hawking. A hundred years ago, he would be dead. But there he is. From a cultural and scientific standpoint, Hawking has made a huge difference, and I'm sure he's done a lot for medicine, if only to show how much can be done to preserve a life.

Medicine. It's really the difference, I suppose. Maybe the daughter mentioned in the article--high risk or not--will be the benefit of further medical advances. It's getting better all the time, after all. Already, with Christopher Reeve--another man who wouldn't have survived a hundred years ago--and his work toward funding the study of the spinal cord and nervous system, great advances have been made.

Sure, passing on the genetic codes of those whose DNA is "imperfect" might be considered pissing in the gene pool, but it's also giving those youngsters a chance to prove themselves in the greater world, and maybe do something that will be remembered for generations. It's not sink or swim anymore; now--at least in the industrially advanced areas--we all get these nifty floaty vests.

... and maybe those "imperfections" are really just nature's way of groping for an improvement? They both start with the imp, after all. ;)

[the-lady-aurora.livejournal.com]

I have polycystic kidneys which is a hereditary condition - I'm in end stage renal failure at the moment. This always coloured my decision about having children. Luckily, I married someone for whom children are not the be all and end all. Sadly, both of my brothers married women who wanted children. They both had 2 boys each and they all have polycystic kidneys - one of them has polycystic liver too. When they were diagnosed, both my sisters-in-law were extremely upset - as you would be - but, at the end of the day, they knew the risks. Both of my brothers have the same condition. We were all informed at the time of diagnosis that the chances of offspring inheriting this condition was very high.

[conuly]

We were all informed at the time of diagnosis that the chances of offspring inheriting this condition was very high.

We have to make our choices in life. But I won't pretend to understand other people's choices, not all the time.

*hugs* I always *did* wonder what it was, but didn't want to ask. Seemed mildly intrusive.

[the-lady-aurora.livejournal.com]

If my parents had made the same choice as me, then I wouldn't be here. So, I suppose I should be grateful to them for that. Even though they, too, knew the risks at the time. This is a condition that has been in the family for generations. Although she hasn't said anything to me, I've been told by an aunt that my mum often tells her how guilty she feels. On my down days, I think "yeah, you should be" but mostly I just accept it. Nothing can be done by dwelling on something that can't be changed.

I don't mind anyone asking anything about me or my health. If I can answer the questions, then I will :0)

[conuly]

If my parents had made the same choice as me, then I wouldn't be here.

Nope, you wouldn't. But if they hadn't fucked when they did, you wouldn't be here either, so what's the difference? ;)

Seriously, it's an interesting conundrum, but not one I'm going to spend time on when dead tired.

I don't mind anyone asking anything about me or my health. If I can answer the questions, then I will :0)

Well, mine was generally "hey, what's up with you always having dialysis*?" so that's answered. But now I know what specifically to ask you about if it ever comes up.

*Is it just me, or does that sound uncomfortably like diaresis?

[xmorningxrosex.livejournal.com]

I hear ya. Supposedly this disease I had (have?) is usually fatal if it's "active" in really young kids, so I think before we have kids, we'll have to do some testing if possible to find that out, because I don't want to have a child that might not even make it to 5 because of something painful and sucky, you know? Nothing wrong with adoption!

[latenightparty.livejournal.com]

I wonder what the odds are of her and her daughter getting cancer, though? Who knows, the daughter might've been born without the gene. And even if you do have it, it doesn't necessarily mean you'll actually get cancer.

But yeah, it sort of bugs me that this lady centered her entire life around the fact that she was sure she'd get cancer. She did... but there's a chance she might not have!

[conuly]

Not a great chance, though. That's roughly akin to saying "I'm centering my life around the odds that I'll die, but there's a chance I won't". Okay, I have greater odds of dying than she had of getting cancer, but her odds of getting cancer weren't as low as you're making out.

[latenightparty.livejournal.com]

So were they over 50-50, I wonder?

[conuly]

You want a 50% chance before you'll take precautions against an early death?

The risk of getting ovarian cancer if a woman has a marker for a mutation is 40 percent, Weber said, compared to 1 percent if they are removed. Once a woman gets the cancer, there is an 80 percent to 85 percent chance of dying, she said.

She had, apparently, a 40% chance of getting ovarian cancer. This is in addition to the increased likelihood of other types of cancer.

[rayinte.livejournal.com]

I know what you're saying... I mean, why would anyone who knows they're high risk for cancer want to have kids who will, in turn, be high risk? It doesn't seem fair to the child.

As for the genetic testing aspect of the article... Gattaca anyone? *likes that movie* Anyhow, I take a very very long view sometimes, and I can see how in some ways, genetic screening might be beneficial to the species. You know--culling the herd and whatnot. Sure, privacy is an issue, and no one should be turned down when they need help... and gah, that's where the difficulty lies.

Stephen Hawking. A hundred years ago, he would be dead. But there he is. From a cultural and scientific standpoint, Hawking has made a huge difference, and I'm sure he's done a lot for medicine, if only to show how much can be done to preserve a life.

Medicine. It's really the difference, I suppose. Maybe the daughter mentioned in the article--high risk or not--will be the benefit of further medical advances. It's getting better all the time, after all. Already, with Christopher Reeve--another man who wouldn't have survived a hundred years ago--and his work toward funding the study of the spinal cord and nervous system, great advances have been made.

Sure, passing on the genetic codes of those whose DNA is "imperfect" might be considered pissing in the gene pool, but it's also giving those youngsters a chance to prove themselves in the greater world, and maybe do something that will be remembered for generations. It's not sink or swim anymore; now--at least in the industrially advanced areas--we all get these nifty floaty vests.

... and maybe those "imperfections" are really just nature's way of groping for an improvement? They both start with the imp, after all. ;)

[the-lady-aurora.livejournal.com]

I have polycystic kidneys which is a hereditary condition - I'm in end stage renal failure at the moment. This always coloured my decision about having children. Luckily, I married someone for whom children are not the be all and end all. Sadly, both of my brothers married women who wanted children. They both had 2 boys each and they all have polycystic kidneys - one of them has polycystic liver too. When they were diagnosed, both my sisters-in-law were extremely upset - as you would be - but, at the end of the day, they knew the risks. Both of my brothers have the same condition. We were all informed at the time of diagnosis that the chances of offspring inheriting this condition was very high.

[conuly]

We were all informed at the time of diagnosis that the chances of offspring inheriting this condition was very high.

We have to make our choices in life. But I won't pretend to understand other people's choices, not all the time.

*hugs* I always *did* wonder what it was, but didn't want to ask. Seemed mildly intrusive.

[the-lady-aurora.livejournal.com]

If my parents had made the same choice as me, then I wouldn't be here. So, I suppose I should be grateful to them for that. Even though they, too, knew the risks at the time. This is a condition that has been in the family for generations. Although she hasn't said anything to me, I've been told by an aunt that my mum often tells her how guilty she feels. On my down days, I think "yeah, you should be" but mostly I just accept it. Nothing can be done by dwelling on something that can't be changed.

I don't mind anyone asking anything about me or my health. If I can answer the questions, then I will :0)

[conuly]

If my parents had made the same choice as me, then I wouldn't be here.

Nope, you wouldn't. But if they hadn't fucked when they did, you wouldn't be here either, so what's the difference? ;)

Seriously, it's an interesting conundrum, but not one I'm going to spend time on when dead tired.

I don't mind anyone asking anything about me or my health. If I can answer the questions, then I will :0)

Well, mine was generally "hey, what's up with you always having dialysis*?" so that's answered. But now I know what specifically to ask you about if it ever comes up.

*Is it just me, or does that sound uncomfortably like diaresis?