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Having Alzheimer’s at 38 (2015)

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Re: Having Alzheimer’s at 38 (2015)

#121

My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's. It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues). Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been ther…

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

The overshadowing argument against this, is the "slippery slope" argument. Today you can reliably screen for Downs, and most of the developed world do. Tomorrow it might be for Huntingtons (btw, we're making progress on testing a fetus for all kinds of genetic markers with a simple blood sample from the mother). But when will we stop? Predisposed for depression? Anger issues? Dwarfism?

I agree that for simple things such as Downs and Huntingtons it's fine. I'd prefer to know as a parent, but we need to have a deep and reflective discussion about the ethics and agree on the guiding principle for the future.

Re: Having Alzheimer’s at 38 (2015)

#122

My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's. It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues). Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been ther…

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

As others have said, HD is usually not diagnosed until well after you have children. Also, some people can be carriers without actually exhibiting symptoms. It goes like this:

1 - There's a particular sequence of bases that are repeated a certain number of times on a certain chromosome 2 - Below 25 repeats: normal, no HD 3 - 25~35 repeats: no HD but there's a risk of spontaneous increase when generating sperm/ovules 4 - 35+ you have HD with more repeats meaning earlier onset and faster progression

My wife's mother has 40 repeats so she's on the milder side of the spectrum(age of onset ~50 and progression is steady but somewhat slow compared to her brother who started at 38)

Individuals in the 25~35 repeats bracket can have children with HD(especially fathers since it seems that there's a higher incidence of increase for them, for some reason)

In our case, my wife tested for this specifically once we seriously started considering the possibility of marriage and children. I'd decided I'd marry her regardless of the outcome but children were a different question altogether, so in that way I do agree with you, but it's definitely not a solution to the problem in the broad case of HD, but in individual cases where it is known to run in the family some people may choose to not have children if they are diagnosed at an early enough age.

That being said, most people would prefer not to know if they have it when a parent is diagnosed, only ~5% of people at risk actually test for it with the vast majority preferring to live in denial. Humans are weird like that, but having seen firsthand what this did to my wife and her family when her mother was diagnosed I don't think I can really blame someone for not wanting to know. You can't make judgements about something like that until you've been in their shoes

Re: Having Alzheimer’s at 38 (2015)

#123
post #77

Dr Rhonda Patrick and Peter Attia are two very prominent researchers that I follow in longitivity and neural degeneration. they discuss APOE4 as being a strong indicator of Alzheimer’s susceptibility. If you have It in your genome it’s scary but also a lot of research goes into preventative means. For example anti inflammation diet is a strong factor because any diseases especially Alzheimer’s is triggered by chronic…

It's difficult to find any scientific paper's by these prominent researchers. Where would one find those? As far as I know, there is no concrete evidence that proves any causal relationship between inflammation and neurodegenation.

Maybe no evidence of a causal relationship, but AD is characterized by neuroinflammation, as are many other neurodegenerative diseases.

Re: Having Alzheimer’s at 38 (2015)

#124

Earlier quoted context omitted.

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

The overshadowing argument against this, is the "slippery slope" argument. Today you can reliably screen for Downs, and most of the developed world do. Tomorrow it might be for Huntingtons (btw, we're making progress on testing a fetus for all kinds of genetic markers with a simple blood sample from the mother). But when will we stop? Predisposed for depression? Anger issues? Dwarfism? I agree that for simple things…

It's not tomorrow, some people already screen for dwarfism or deafness to give them to their child.

https://www.nytimes.com/2006/12/05/health/05essa.html

Re: Having Alzheimer’s at 38 (2015)

#125

My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's. It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues). Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been ther…

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

"people voluntarily using birth control..."

You do understand that some folks have few options for this, right? I have never wanted children. I'm female. I cannot take hormonal birth control. I would have been sterilized early in life, but most doctors won't do it to young folks. I'm nearly 40 now. Surgical sterilization is more of an option, but is still rather expensive. Additionally, it doesn't always prevent pregnancy and the option that would - a hysterectomy - isn't a healthy thing to do to an otherwise healthy person.

Condoms have their own downsides. Some of the lubricants make me itch. Plus the risk of breaking and all of that stuff. Sure, it is my option, but it sucks. Not to mention that they change the way sex feels for me, let alone the man. Luckily, my spouse is more than willing to be sterilized.

Even with various birth control methods, folks still become pregnant.

Abortion isn't always an option for folks - especially with states and entire countries restricting abortion for any reason. I'm not sure if doctors would test for these genes pre-birth either like they do for a few disorders, and the test itself has has some risks to the fetus.

I can only imagine the hell someone would go through that wants to have children, yet are simply too afraid of passed on some gene that might not be passed on - let alone that they might not even know it runs in the family. I'm not sure they'd be able to avoid having children simply by a combination of accident and happenstance. I've been lucky enough to avoid it, but many others have not and had few realistic options once it happened.

Re: Having Alzheimer’s at 38 (2015)

#126
post #67

Earlier quoted context omitted.

I think the issue you are probably running into is a lot more nuanced then you are portraying it to be. Whether you are religious or scientific or some mix of both, creating offspring is a pretty fundamental instinct that is very deeply ingrained into humans. Logic might say "If you have a genetic abnormality you should stop procreating for the greater good of society/your potential offspring/yourself". But we aren't…

The slippery slope argument is nonsense. By that logic taxes is a slippery slope to communism. Employment a slippery slope to prostitution :) We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.

> We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.

Where does it end? My Aunt had cancer. My father high blood pressure. I think one uncle on my estranged mothers family was quite mad.

Am I allowed to procreate? Who draws the line on what is an acceptable level of hereditary risk factors?

Re: Having Alzheimer’s at 38 (2015)

#127

My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's. It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues). Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been ther…

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

Forcing people to do things because they were diagnosed will only make people avoid being diagnosed.

Re: Having Alzheimer’s at 38 (2015)

#128
post #78

Earlier quoted context omitted.

Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring tha…

> Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to Perhaps because not having existed can be equally as tragic as having existing but having a disease? Lots of people are living today who were born blind, or with this or that genetic tendency. And they live their lives…

>Is the argument that these people better they weren't born at all?

This statement is true for all people.

Re: Having Alzheimer’s at 38 (2015)

#129

Earlier quoted context omitted.

You're still flushing all the other embryos down the drain. It doesn't seem as awful as lots of other shit that happens every day, but it's certainly sketchy enough that I wouldn't do it. Humans are not livestock.

Can you define what’s the moral difference against trisomy prescreeners? Or are you against these too? Honest question btw.

I'm not 100% comfortable with the trisomy thing, but I understand why people do it. The "moral difference" is primarily one of scale. Choosing to abort or not, in one particular case, is a human decision. That's even true of abortions motivated by "less moral" factors like economics or convenience. Those are still human decisions.

Deliberately aborting 99 out of 100 or 999 out of 1000 or whatever, that's not how humans interact with each other. That's the sort of decision-making I reserve for cattle or other livestock. (Although we wouldn't make much money if we were so Procrustean in our evaluation...) In that sphere, it's considered immoral by lots of perfectly sane people.

I'm not saying that this practice will never be normalized and accepted by most people. I am saying that if researchers try a little harder and develop methods with the same results but less abortion, the world will be a better place.

Re: Having Alzheimer’s at 38 (2015)

#130

Earlier quoted context omitted.

Can you define what’s the moral difference against trisomy prescreeners? Or are you against these too? Honest question btw.

I'm not 100% comfortable with the trisomy thing, but I understand why people do it. The "moral difference" is primarily one of scale. Choosing to abort or not, in one particular case, is a human decision. That's even true of abortions motivated by "less moral" factors like economics or convenience. Those are still human decisions. Deliberately aborting 99 out of 100 or 999 out of 1000 or whatever, that's not how huma…

Good point about scale. Tbh. I doubt that more than an 1/10 ratio is going to be feasible due to limits given from female biology. If people start doing that, something like CRISPR will soon be employed to fix such issues directly - if the west doesn’t allow it, people will simply travel to a country that will. For families with severe disorders, the cost of doing so will be much lower than to just take the chances with nature, so I think there’s going to be sort of a price balance for each illness. The main risk IMO is a Gattaca-style dystopia.
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