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This is a touchy subject but with my genetic condition I’m scared to have kids. It sucks having this and I don’t know if I would want to watch my kids suffer th

This is a touchy subject but with my genetic condition I’m scared to have kids. It sucks having this and I don’t know if I would want to watch my kids suffer through it. But I’m glad my parents did cause life isn’t that bad in the end.

thinkloop 6y ago
Dogs are 50% the joy at 5% the effort :p Not having kids is great too :D
- tbarbugli 6y ago
  dog * x = kid x does not exist
  - kj98uo 6y ago
    for you. might still apply to others
- Cthulhu_ 6y ago
  I'd argue in favor of cats instead, the only downside is that they're pissed off and plotting to murder you the whole time.
DoreenMichele 6y ago
I didn't get a diagnosis until my kids were like 11 and 14, I think. I didn't have to think about that aspect, in part because my first child was the result of failed birth control. I was already married, so I didn't consider having an abortion. But when I was having kids, I was still being treated like I was a hypochondriac. I sometimes refer to my diagnosis as "a better name for my condition than crazy."
- lonelappde 6y ago
  Real Talk: no one is trying to kill you for profit. They just don't care about you because you're can't make money for them. It's still bad, but different. You meet a lot of skeptics because no matter how honest or correct you are, without access to a large test population and a way to precisely measure your dozens of tiny ideas that add up to a healthier overall life, it's impossible for an outside observer to distinguish you from quacks like Gwyneth Paltrow. Also, being upfront about your suffering makes people uncomfortable and avoidant. Not your fault, but that's life. You have a lot of disappointment with HN, largely because you see all these rich people who like talking to you but won't invest in you. My advice: take a lesson from them. Put on a fake happy face, rewrite your narrative so that your pain is in your past, copy the obnoxious marketing techniques that smell foul but work. You're in a "line" where everyone thinks you are bullshitting. If you can't beat it, join it. Run your effort the same way the dishonest snake oil salesmen do, and use your own conscience to tell you you are doing good. Make a little money selling whatever to health fad chasers, and put that money to good use as you see fit. Answer to no one but your conscience, but behaving in the way "polite society" demands, not because they are right, but because that's how you'll get paid attention and money.
  - carapace 6y ago
    Health insurance companies will try to kill you for profit. Anyway, I upvoted your comment because I feel that you're giving good, or at least useful, advice. The fact that is is good advice kinda sucks. But that's not your fault. It's just the way it is.
  - DoreenMichele 6y ago
    You have a lot of disappointment with HN Much realer talk: I have been here nearly 11 years. I appear to be the only woman to have ever spent time on the leader board and it looks like I am probably on track to also be the second woman to spend time on the leader board under my new handle (this one). I have my criticisms of what goes on here, but I spend so much time here because whatever sexism and nonsense happens here pales in comparison to the hip deep crap of most other spaces. So I'm quite fond of HN, which is a large part of why I am here so much. Rumors of my supposedly significant disappointment with HN are somewhat exaggerated for various reasons. Though I stand by my position that it should be easier to turn my writing into income than it has proven to be and I stand by that not solely for my benefit but because of broader implications throughout the world that this issue has which people complain loudly about on a regular basis here and seem to fail to connect the dots between those issues and their choices. The fact that I choose to use myself as an example of this phenomenon should not be misconstrued as me being hugely personally butthurt with no larger point. I use myself as an example because then I'm not doxxing other people or making them a target or whatever. I can decide just how much heat I care to take for today and walk away when I have had enough. I do that as a "best practice" that I have worked out over the years. That's it. It's the least worst option in situations where unpleasantness is unavoidable. I have zero plans to sell health fad crap. That absolutely will not happen and it's one of the reasons most of my sites have no ads: because the kinds of things I talk about tend to attract ads for things I would never, ever recommend, like colloidal silver which is straight up literal poison. I may at some point in the future move to zero ads. I'm aware that most of HN uses adblockers and I understand and respect the reasons they do that. But if you want good content and you don't want ads, somehow that has to be paid for. And the current climate adds up to "Writers are just supposed to work for free." I think that's a fundamentally broken mental model. It's not sustainable. It's in line with ideas like "If you aren't the customer, you are the product." People decry content marketing, then don't want to support indie authors. If you want everything free and don't want to pay your authors, they will work for someone who will pay them. And that means content marketing. If that's not the internet you want, then you need to stop insisting that writing simply doesn't pay and start kicking a few bucks towards indie authors whose content you would like to see more of.
mantap 6y ago
Depending on the condition it may be possible to do genetic screening with potential partners, assuming you are single right now. And you can always adopt.
bradlys 6y ago
My significant other is in a similar boat. We’re convinced she has a genetic mutation that causes the way she looks. (Fortunately for her, that’s all it does so far) A doctor suspected she has it and so on. We haven’t done genetic testing yet to confirm 100% but it’s something we are considering. Personally, I would like to have children with her that are related to us. But, it’s hard because her genetic mutation carries some heavy risks that she’s avoided so far that I’m not really on board to take. We avoid talking about it a bit. She wants children desperately too. She isn’t keen on adoption and wants to experience pregnancy. For anyone curious: it’s waardenburg syndrome.
- DoreenMichele 6y ago
  Now that this has dropped off the front page: Just food for thought for you in your relationship concerning the detail that your girlfriend desperately wants children and wants to experience pregnancy (the comment is by me, under my old handle): https://news.ycombinator.com/item?id=8155574 https://news.ycombinator.com/item?id=8155574
- im3w1l 6y ago
  If I were in your position and had money to blow, I'd ask medical experts if it's possible to prevent the genetic mutation from being passed on. Can they do screening? Can they transplant a healthy chromosome to replace the broken one? If I didn't I'd ask a healthy relative of hers to donate eggs to implant into her.

thinkloop 6y ago

Dogs are 50% the joy at 5% the effort :p Not having kids is great too :D

tbarbugli 6y ago
dog * x = kid x does not exist
- kj98uo 6y ago
  for you. might still apply to others
Cthulhu_ 6y ago
I'd argue in favor of cats instead, the only downside is that they're pissed off and plotting to murder you the whole time.

DoreenMichele 6y ago

I didn't get a diagnosis until my kids were like 11 and 14, I think. I didn't have to think about that aspect, in part because my first child was the result of failed birth control. I was already married, so I didn't consider having an abortion. But when I was having kids, I was still being treated like I was a hypochondriac. I sometimes refer to my diagnosis as "a better name for my condition than crazy."

lonelappde 6y ago
Real Talk: no one is trying to kill you for profit. They just don't care about you because you're can't make money for them. It's still bad, but different. You meet a lot of skeptics because no matter how honest or correct you are, without access to a large test population and a way to precisely measure your dozens of tiny ideas that add up to a healthier overall life, it's impossible for an outside observer to distinguish you from quacks like Gwyneth Paltrow. Also, being upfront about your suffering makes people uncomfortable and avoidant. Not your fault, but that's life. You have a lot of disappointment with HN, largely because you see all these rich people who like talking to you but won't invest in you. My advice: take a lesson from them. Put on a fake happy face, rewrite your narrative so that your pain is in your past, copy the obnoxious marketing techniques that smell foul but work. You're in a "line" where everyone thinks you are bullshitting. If you can't beat it, join it. Run your effort the same way the dishonest snake oil salesmen do, and use your own conscience to tell you you are doing good. Make a little money selling whatever to health fad chasers, and put that money to good use as you see fit. Answer to no one but your conscience, but behaving in the way "polite society" demands, not because they are right, but because that's how you'll get paid attention and money.
- carapace 6y ago
  Health insurance companies will try to kill you for profit. Anyway, I upvoted your comment because I feel that you're giving good, or at least useful, advice. The fact that is is good advice kinda sucks. But that's not your fault. It's just the way it is.
- DoreenMichele 6y ago
  You have a lot of disappointment with HN Much realer talk: I have been here nearly 11 years. I appear to be the only woman to have ever spent time on the leader board and it looks like I am probably on track to also be the second woman to spend time on the leader board under my new handle (this one). I have my criticisms of what goes on here, but I spend so much time here because whatever sexism and nonsense happens here pales in comparison to the hip deep crap of most other spaces. So I'm quite fond of HN, which is a large part of why I am here so much. Rumors of my supposedly significant disappointment with HN are somewhat exaggerated for various reasons. Though I stand by my position that it should be easier to turn my writing into income than it has proven to be and I stand by that not solely for my benefit but because of broader implications throughout the world that this issue has which people complain loudly about on a regular basis here and seem to fail to connect the dots between those issues and their choices. The fact that I choose to use myself as an example of this phenomenon should not be misconstrued as me being hugely personally butthurt with no larger point. I use myself as an example because then I'm not doxxing other people or making them a target or whatever. I can decide just how much heat I care to take for today and walk away when I have had enough. I do that as a "best practice" that I have worked out over the years. That's it. It's the least worst option in situations where unpleasantness is unavoidable. I have zero plans to sell health fad crap. That absolutely will not happen and it's one of the reasons most of my sites have no ads: because the kinds of things I talk about tend to attract ads for things I would never, ever recommend, like colloidal silver which is straight up literal poison. I may at some point in the future move to zero ads. I'm aware that most of HN uses adblockers and I understand and respect the reasons they do that. But if you want good content and you don't want ads, somehow that has to be paid for. And the current climate adds up to "Writers are just supposed to work for free." I think that's a fundamentally broken mental model. It's not sustainable. It's in line with ideas like "If you aren't the customer, you are the product." People decry content marketing, then don't want to support indie authors. If you want everything free and don't want to pay your authors, they will work for someone who will pay them. And that means content marketing. If that's not the internet you want, then you need to stop insisting that writing simply doesn't pay and start kicking a few bucks towards indie authors whose content you would like to see more of.

mantap 6y ago

Depending on the condition it may be possible to do genetic screening with potential partners, assuming you are single right now. And you can always adopt.

bradlys 6y ago

My significant other is in a similar boat. We’re convinced she has a genetic mutation that causes the way she looks. (Fortunately for her, that’s all it does so far) A doctor suspected she has it and so on. We haven’t done genetic testing yet to confirm 100% but it’s something we are considering. Personally, I would like to have children with her that are related to us. But, it’s hard because her genetic mutation carries some heavy risks that she’s avoided so far that I’m not really on board to take. We avoid talking about it a bit. She wants children desperately too. She isn’t keen on adoption and wants to experience pregnancy. For anyone curious: it’s waardenburg syndrome.

DoreenMichele 6y ago
Now that this has dropped off the front page: Just food for thought for you in your relationship concerning the detail that your girlfriend desperately wants children and wants to experience pregnancy (the comment is by me, under my old handle): https://news.ycombinator.com/item?id=8155574 https://news.ycombinator.com/item?id=8155574
im3w1l 6y ago
If I were in your position and had money to blow, I'd ask medical experts if it's possible to prevent the genetic mutation from being passed on. Can they do screening? Can they transplant a healthy chromosome to replace the broken one? If I didn't I'd ask a healthy relative of hers to donate eggs to implant into her.