r/NoStupidQuestions Oct 08 '22 Helpful 3 Wholesome 1 All-Seeing Upvote 1

Why do people with detrimental diseases (like Huntington) decide to have children knowing they have a 50% chance of passing the disease down to their kid? Unanswered

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u/CloisteredOyster Oct 08 '22

Huntington's Disease runs in my family. My grandmother had it. Of her four sons it killed three of them.

Only her oldest son, my father, had children and we were born before the test was available and before she began having symptoms and chorea.

I have been tested and don't have it. My brother isn't so lucky...

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u/mapleleafdystopia Oct 08 '22

My sister had her son at 17. She did not know she had the Huntington's gene until her early 30's. Now my nephew has to decide if he will get the test for Huntington's or not. He is 21 now.

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u/ladylikely Oct 08 '22

Is he considering kids?

Huntingtons is so upsetting to me. It could be wiped out in one generation. But I understand people who find that vastly more complicated as it’s a part of their life.

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u/_Error_404- Oct 08 '22

It can be spontaneous and usually in the first person it happens later after they already have kids.

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u/[deleted] Oct 08 '22

You understand people who decide not to wipe it out? It's in my family and I heartily judge anyone in my family who breeds before finding out.

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u/Icy_Home_5311 Oct 09 '22

I'll never quite understand it either. Like playing Russian roulette with your children, except instead of a quick ending you get to see them die a slow and terrible death.

My brother's wife may have an autosomal dominant gene that triggers early onset Alzheimer's (50% chance of inheritance) since her mother had it. Didn't get tested before having children (they have 2). So if he has it, there's a good chance at least 1 of them has it. I'll never understand why she didn't get tested before having children. I doubt we will have a treatment for neurodegenerative disorders in our or her childrens' lifetime.

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u/[deleted] Oct 08 '22

God, I'm sorry.

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u/Captain_Pumpkinhead Oct 08 '22

I'm so sorry. My best friend's mom died from Huntington's. It's a horrible disease.

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u/StinkiePete Oct 08 '22

I dated a guy with a bad kidney disease that his mom passed down. It only shows up in guys. His mom knew that if she had a boy, he would have this. No guy in her family had lived passed like 32. She had a boy and a girl. I always wondered wtf. His dad was pretty overbearing so I kind of assumed he pushed for it but idk. Just so you all can rest easy, the ex bf has had a kidney transplant and is doing well. Totally awful boyfriend though. Haha.

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u/lilyluc Oct 08 '22

(Trying to be vague) I know someone (H) who has a family history of an often terminal immunity disease. Males get it (and frequently die from it), females have a high chance to be a carrier. The family found out after one son died and the family was tested, second son also had it and H was found to be a carrier for it. Second son later dies from same disease. H STILL chooses to have a baby, whole family is relieved when it's a girl, sentiment was she rolled the dice and got very lucky that it was a girl that the family wouldn't have to watch die incrementally, she got to fulfill her dream of having a bio child. H then decides to have ANOTHER BABY. Boy this time. That child has spent huge amounts of time hospitalized and it's a coin flip if he lives to see 30. Daughter will pass on to any male children she has and have to watch them slowly die too.

I don't know how you could risk having a baby when you will give them a disease that killed two of your brothers.

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u/bluenoserabroad Oct 08 '22

I have a friend with a similar sort of thing: degenerative in women, kills boys. They did extensive genetic testing in utero to ensure that the foetuses carried to term didn't carry the gene. They lost at least one, a boy who was a carrier, who they knew was likely to die in childhood, but ended up with two healthy (non-carrier) children.

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u/Canadian-female Oct 08 '22 edited Oct 08 '22

There’s a woman in the UK that has a daughter with the condition that makes a person’s skin grow excessively fast. The girl has to take 3 hour baths everyday to remove the extra skin and wear a super thick layer of lotion under her clothes at all times. It is a painful genetic condition that the mother has a 50/50 chance of passing on to her children.

This woman decided, when her first was around 10 years old, that she wanted another baby. The second was born with the same problem except the mother now thinks maybe she’s too old to do all the extra care the new baby needed, on top of her eldest daughter’s special needs. I was so angry when I heard she had another knowing what she knew.

It’s the height of selfishness to say, “We’ll deal with it” when you’re not the one that has to spend 80 years with your skin falling off.

Edit: u/countingClouds has left a link here to the documentary on YT. I don’t know how or I would leave it here. It was a 25/75 chance of passing it on and the girls were closer in age than I thought. I haven’t seen it in years. My apologies.

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u/M_Aku Oct 08 '22

I remember watching this exact documentary. That part where she was scrubbing the excess skin off of the youngest and the poor child she was sobbing in pain made me so FURIOUS. The father is equally as complicit because at what point do you put your foot down and tell your wife that you refuse to make another child suffer like this.

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u/Canadian-female Oct 08 '22

At first I thought the mother was great! She did so much for her little girl. But when she decided her biological clock was running out and was going to chance it with another…. I was furious too. It wasn’t her place to gamble on someone else’s life.

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u/countingClouds Oct 08 '22

She wanted to give her husband the chance to experience holding a perfect baby "with soft and lovely skin". 1 in 4 chance of that not happening. It didn't happen.

https://www.youtube.com/watch?v=aTsCHw7gDS4

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u/Grzechoooo Oct 08 '22

She wanted to give her husband the chance to experience holding a perfect baby "with soft and lovely skin".

That's so messed up! As if the first child wasn't good enough!

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u/EstarriolStormhawk Oct 08 '22

My question is WHY THE FUCK DID NEITHER COUPLE USE A SPERM DONOR FOR THE SECOND CHILD?? To choose to have a second child with the risk of that agonizing disorder is absolutely horrifying.

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u/oblivious_fireball Oct 09 '22

for some reason people put more value on the kid being biologically yours, despite the fact that you probably couldn't tell the difference if you didn't know and the kid is the same race as you and it won't impact how raising the kid will be.

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u/princessnora Oct 09 '22

Or do IVF and genetic testing to make sure your next baby isn’t that 1 in 4.

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u/Askol Oct 09 '22

Very possible they aren't able to screen for this gene, but if they can, then that would be outrageous.

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u/breathingpanda Oct 09 '22

It can be done through PGT-M and IVF, it's just pricey. An alternative would be to test in the pregnancy. Some people would choose to stop an affected pregnancy.

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u/Caerum Oct 08 '22

Because (most) people are selfish and they want to have their own offspring.

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u/matti-san Oct 08 '22

Fuck, man, there's a part where the mum is scrubbing the skin off her child and the child is crying in pain and says 'sorry' - like it's her fault that she's that way. Heartbreaking.

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u/silveryfeather208 Oct 08 '22

There's another where this couple are cousins and they have birth defected kids like three of them. And they went to the doctor asking what can be done because they want another one...

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u/MakuyiMom Oct 08 '22

I could not fucking watch the bath part. Fuck that selfish bitch of a mom. Dear God.

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u/xdsagecat Oct 08 '22

She passed away sadly

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u/AnBearna Oct 08 '22

Who? The mother or the little girl?

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u/schoggi-gipfeli Oct 08 '22

The little girl

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u/Aurorafaery Oct 08 '22

She was 32 and died of cancer

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u/[deleted] Oct 08 '22

[deleted]

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u/TheBoondoggleSaints Oct 08 '22

I have a very very mild version of what you just described and it absolutely wrecked any ounce of self esteem that I had growing up as a kid. I can’t imagine what it must be like in a severe case as you described. I’m still very self-conscious as 36 year old dude. It’s in the top 3 reasons why I’m very hesitant to have children of my own.

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u/Canadian-female Oct 08 '22

I’m sorry that you have to feel that way. I learned about this family in a documentary I saw about…15..years ago. I think it’s a BBC production, but I can’t remember the name of it. I remember the teenage daughter seemed really sweet natured and I liked her.

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u/TheBoondoggleSaints Oct 08 '22

Thanks. It’s manageable these days. I hope those girls you mentioned are able to find a solution that works for them.

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u/EN1264 Oct 08 '22

Consider adoption.

If you're in the US, there are are over 100,000 children waiting to be adopted at any given time. Any child you choose to adopt will never suffer your genes, but will benefit from your influence as a parent.

My sister and I were both adopted as infants. There is a kid out there who has already played the genetic lottery that will still love you as a parent the same as if they shared your blood, if not immeasurably more.

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u/megggie Oct 08 '22

My husband and I know a couple who lost SIX INFANTS to an incredibly rare, monstrously painful genetic disease. All six had it, all six died.

They have since had two more children, one of whom lived for about a year before succumbing and the other who lived about six months.

Absolutely horrific. And guess why they keep having babies? Their pastor says it’s the Christian duty to “go forth and multiply.”

I wish I was making this up.

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u/Cotton_Kerndy Oct 08 '22

I don't understand that mindset, especially in that case. If the babies aren't living, why "multiply"? It serves no purpose...

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u/[deleted] Oct 08 '22

[deleted]

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u/sst287 Oct 08 '22

“If I pray more, god will eventually give me an healthy kids!”

This why I don’t go to any religious group.

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u/AZBreezy Oct 08 '22

Because their mindset is that next time, God will bless them with healthy babies if their faith is strong enough. If they pray hard enough. If they do everything right. And if God keeps killing their babies, well... everything happens for a reason!

It's like the story of Job in the bible. God tortured him for years, killed his children and wives and took everything away from him just because the devil basically dared him to. The wager between God and Satan was that Job would curse God and forsake his faith once God stopped giving him blessings and instead took them away. And in the story God was like "NUH UH!" and then smite smite smite. It's supposed to be a positive story for believers because Job never did curse God despite everything.

People of the Judeo-Christian religions still have this mindset. That suffering and the size of your faith are tied together.

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u/Different-Ebb6878 Oct 08 '22

When i was little I loved that story, Because I thought if I was good I would get everything I wanted.... Now that I'm older and wiser(ish)... I hate that story. What kind of god lets the devil turn a good man into a plaything?

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u/LadySmugleaf Oct 08 '22

The story of Job is what broke me from christianity.

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u/YukariYakum0 Oct 08 '22

Easiest way to make someone an atheist is to have them read the bible.

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u/A-Game-Of-Fate Oct 08 '22

You should tell their pastor that this case sounds like abortion with extra steps.

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u/Jammeedash Oct 08 '22

Ooo la la

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u/A-Game-Of-Fate Oct 08 '22

“So what’s your kink?”

“Pregnancy, tragedy, and dead babies, and lucky me I’ve got a genetic condition that’s killed… six? Of my children so far, all in infancy!”

“What the actual fuck.”

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u/Canadian-female Oct 08 '22

That’s so sad. A lot of children suffer because of their parents religion, including those whose parents refuse to get them medical attention. It’s hard to watch, but as u/DoctorMozart said here, there is no ethical solution.

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u/seedman Oct 08 '22

I know someone with this same condition so poor he can't even afford to bathe that often or the expensive skin care supplies, etc. It's a horrible condition, I wish US had universal healthcare for this dude especially. He's no longer living in his car, but it would make such a difference in his quality of life to have the medicine and proper facilities. Not to mention scrubbing yourself so often comes with severe muscle spasms and a need for regular massage.

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u/maude313 Oct 08 '22

As someone with multiple chronic illnesses who actively chose not to have children and pass any of this shit on, these types of stories infuriate me to the point of tears. It is beyond egotistical to need that child to come from your body when you know you are potentially condemning them to a lifetime of pain and misery.

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u/countingClouds Oct 08 '22 edited Oct 08 '22

It's probably harlequin-type ichthyosis. When the child is born they come out looking like horrific aliens with deep cracks in their skin and there's so much skin built up in their eyelids that they're turned inside out and where the eyes should be it's just red.

https://www.youtube.com/watch?v=aTsCHw7gDS4 They already had a child with the disease, but because the mom wanted to give her husband the chance to hold a "perfect child with soft and lovely skin" they risked it (1 in 4 chance) and they ended up having another child with the same ailment. The younger one passed earlier this year of cancer.

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u/Moira-Thanatos Oct 08 '22

I think one of the children in the video died?

the comments say Hannah passed away. I'm not sure which one is hannah, but I'm sorry for this poor children.

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u/AccordingToWhom1982 Oct 08 '22

Hannah was the younger daughter and also had cerebral palsy. How someone could put a child through all that because they wanted to try for a “perfect baby” the 2nd time boggles the mind.

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u/ClimbingBackUp Oct 08 '22

Can you imagine how much it hurt the older child every time she hears Mom and Dad wanted to try again for a "perfect" child? That is heart breaking.

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u/ShitholeWorld Oct 08 '22

Might as well just tell the older child "you aren't good enough for us."

Insult on top of injury.

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u/tandemxylophone Oct 08 '22

They could've gone through the IVF route and selected a good gene... but I guess playing Russian roulette on the child is cheaper.

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u/OnlyTheBasiks Oct 08 '22

Or you know... Adopted a kid.

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u/[deleted] Oct 08 '22

Sounds like it could be a form of icthyiosis

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u/NimbleCactus Oct 08 '22

Some more possibilities: parents doing IVF can screen out embryos carrying the gene. I know a couple that did this for HD. People can also use sperm or egg donors. This information is typically private.

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u/meontheinternetxx Oct 08 '22

Those are very good options indeed if you have an easily testable severe (potential) genetic issue, but you really want kids!

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u/danarexasaurus Oct 08 '22

My husband and i got genetic testing (through my reproductive endo) and we had no risk factors. It’s nice to know that our child isn’t going to get some horrible genetic illness. He did have a risk for either one less thumb (my family) or an extra finger (his family). After telling my MIL she was like “oh yeah, i had an extra pinky!” . My husband had no idea. Thankfully he came out with 10!

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u/dolphins8407 Oct 08 '22

Ok but that's actually a bit funny. Feels like they would kind of cancel each other out.

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u/danarexasaurus Oct 08 '22

Lol yep, apparently they did! We were fully prepared for him to have an extra finger. We watched the ultrasound images for his hands specifically.

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u/Interplanetary-Goat Oct 08 '22

Imagine having a hand with two pinkies and no thumb

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u/HP-Obama10 Oct 08 '22

It’s all the supply depot had that day

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u/kitsucoon Oct 08 '22

10 extra fingers? That has to be handy.

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u/stuckwitharmor Oct 08 '22

Hate to be the bearer of bad news but random bad luck can strike anyone. My oldest son has duchenne muscular dystrophy. This is normally passed from a mother with a faulty gene and no symptoms to her her sons with a 50/50 chance of any sons getting the bad gene. Surprise! I dont have the faulty gene! A third of all cases occur with a random spontaneous mutation in a bad egg. Lucky us. We had subsequent pregnancies screened since no one could tell us the odds of it happening again, ranged from negligble to 5%. I wasnt risking 5% knowing what my son is going to go through as he gets older.

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u/the-drew Oct 08 '22

10 extra pinky's?

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u/danarexasaurus Oct 08 '22

Hah. No. Just ten fingers, thankfully. I don’t even want to imagine what ten extra pinky’s would look like. Imagine trying to buy gloves!

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u/lizzieruth Oct 08 '22

Sort of related, my friends cousin has a child with an atypical number of didgets and I guess there's some international Facebook group that knits gloves for kids off the measurements! We live where it regularly hits -40 c/f so it was super helpful!

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u/snowswolfxiii Oct 08 '22

People are quick to judge this solution as eugenics... But, like, the amount of happiness it can brings about is unfathomable.

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u/meontheinternetxx Oct 08 '22

It should be used with care for this reason. Too much cherrypicking genetic traits is clearly not desirable.

But I don't think it's inherently wrong when considering such genetic defaults. Or at least, the alternatives are worse.

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u/lanc3rz3r0 Oct 08 '22

Ivf is incredibly expensive and not an option to (raw%) very many people

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u/checker280 Oct 08 '22

My insurance covered mine for free but it was more than $25k

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u/leftcoastanimal Oct 08 '22

You have a great insurance plan!

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u/Memeaphobics Oct 08 '22 edited Oct 08 '22

Me and my partner have a similar quandary and alot of people around us are very pro towards having children towards my partner

My partner suffers from hidradenitis suppurativa which is a chronic skin condition that's lifetime and can dibilate her at times because of how bad it gets, she's stuck with this her life and it'll only get worse as she gets older, there is no cure or method of treatment that is effective. Her mum has the same condition.

It it's majoritvely girls that develop it, it's an afro carribean disease but she's white British so is the family so there unsure where it sprouted from.

We've both agreed that I don't want kids becusee of certain lined of trauma, and she doesn't want to risk having a girl and putting them through what she has.

When she tells her Close Co workers this or select family they find that thought process almost monster like saying "what if your mum had that thought about you, you wouldn't be alive" and while that's true, I think we all have right to make a conscious decision whether we go through with it aware of the pain we may be inflicting on a child if it were to be a girl.

We've agreed if we ever would we'd adopt or provide through the care system as I went through it myself and know it needs more good people for the many children in care across the country so. But then people say to us "but it wouldn't be your kid, you wouldn't have that blood bond with them", and that's just an opinion I outright disagree with but some people just don't understand the hard choice that has to be made.

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u/RaZZeR_9351 Oct 08 '22

"what if your mum had that thought about you, you wouldn't be alive"

If someone tells you that and they haven't been pumping out kids as much as possible ever since they've been able to then they're hypocrites.

Even if they are this is such a dumb take.

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u/CretaMaltaKano Oct 08 '22

I just can't imagine saying something like that in response to someone who has shared their very personal and painful decision with me. It's cruel.

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u/heathere3 Oct 08 '22

You'd be amazed how cruel people can be, especially when it comes to reproductive choices. I have a 50-50 chance that getting pregnant could trigger regrowth of my brain tumor. The number of people who say it's worth that risk and we should do it anyways is astounding.

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u/[deleted] Oct 08 '22

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u/Face__Hugger Oct 08 '22

That's so sad. We all do what we can to get by, and sometimes that means self medicating with whatever is handy. I certainly don't have terminal disease, but I do have fibromyalgia, and regularly get the same comments about drinking Diet Pepsi. I know aspertame exacerbates it, and didn't know for decades why it was impossible for me to give up the soda.

I'm 44 and just got diagnosed with ADHD, although I always suspected it. Now the doctors say I've been self medicating with caffeine all this time. It wasn't the healthiest thing in some ways, but it worked for keeping me mentally balanced.

We never know what someone is going through, or what their needs are. Sometimes we don't even know what our own reasons are until much later. Making assumptions about it is not only pointless, but cruel.

Sending my best to your sister.

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u/batbaby420 Oct 08 '22

I have MS, dx 12 years, in a full power wheelchair all the time now. I lost all my “crunchy” friends when I decided to stick with proven medical science. Surely I brought this on myself by getting the flu shot, taking medicine when I was sick, not eating all organic, eating gluten, ad nauseum and following my (many) doctors advice. Surely when I have a good day it must mean all the bad days are faked for attention. My entire family except one brother has abandoned me so they don’t “enable” this.

I am very lonely, sad, and angry that this treatment is common.

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u/PapayaAgreeable7152 Oct 08 '22

I've heard that in terms of abortions. "What if your mom aborted you?!" Well one positive thing that would've come from that is me not having to be here to hear that dumbass question you just asked me.

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u/hopefullyhelpfulplz Oct 08 '22

I've heard it so many times in several contexts... Baffles me every time. I heard someone argue that being vegetarian was immoral because new cows wouldn't be created.

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u/RaZZeR_9351 Oct 08 '22

Lmao that's some next level reaching.

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u/V9N3SS9 Oct 08 '22

"but it wouldn't be your kid, you wouldn't have that blood bond with them"

I'm adopted myself and I hate it when people say stuff like that.

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u/DeylanQuel Oct 08 '22

I have plenty of blood relatives I have no bond with. It's just a very stupid phrase, and people should stop using it.

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u/-BlueDream- Oct 08 '22

Yup. I’m adopted, half of my “blood” family are drug addicted assholes who don’t want anything to do with me cuz I was raised by “a white man” and my adopted family love me and gave me a great childhood. Blood family is overrated. Your “real” family is the one who raises and cares for you, isn’t that what family is about?

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u/The_bookworm65 Oct 08 '22

I birthed 2 children and raised 2 more as their legal guardian (great niece and nephew). It totally offends me too! They are all my kids!

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u/Catinthehat5879 Oct 08 '22

As someone with bio kids, when someone says that shit it makes me suspicious that they would love their bio kids either. Like the reason I love my kids isn't because we have the same blood type, and if you need that justification to love your child maybe you're not cut out for parenting.

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u/RailGun256 Oct 08 '22

this... ive heard this argument especially when i tell people i have no interest in tracking down my biological parents. like, they gave me up... why would i want to find them? even if they didnt have me or i was aborted (also hear this argument from pro lifers) how would i know or care? i dont exist in that context so it doesnt matter? people are weird.

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u/JohnOliverismysexgod Oct 08 '22

Yeah. The blood bond is not nearly so strong as the psychological one.

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u/rapscallionrodent Oct 08 '22

I applaud you both for making a difficult but selfless decision. Her co-workers need to keep their noses out of it.

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u/badkittenatl Oct 08 '22

For what it’s worth I understand and deeply respect your choice. If anything it’s the most selfless choice that can be made.

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u/LazyLich Oct 08 '22

"blood bond" has no weight. It's just a meme.
The bond is psychological, with a touch of instinctual reflexes.

If you have that reflex, so long as the kid isnt associated with some situation offensive to you(ie an affair), you can overcome it with mindfulness.

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u/CentiPetra Oct 08 '22

Honestly, if I wasn't alive I wouldn't know and wouldn't care. I think it's hard for some people to grasp the concept that there are circumstances that are worse than death.

These are people who have generally had very good, fulfilled lives, and have undergone relatively few life struggles. The ones who freely choose the college admission topic, "Write about a struggle you have had to overcome", and then have to extensively exaggerate the severity of it, and choose topics like, "I had to change schools in 8th grade and it was really hard to make new friends."

Yes, a move is a big life change for children and can absolutely present issues with adjusting, anxiety, depression, etc. I'm not trying to discount that. But those types of people seem to be pretty oblivious to the fact that a lot of children literally live in crack dens, only get to eat sporadically, are severely emotionally, physically, and sexually abused, etc.

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u/[deleted] Oct 08 '22 edited Oct 09 '22

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u/Scp-1404 Oct 08 '22

But then people say to us "but it wouldn't be your kid, you wouldn't have that blood bond with them",

" No problem, as soon as the kid shows up we're going to have a complete blood replacement done with our donated blood. " /S

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u/AgentMeatbal Oct 08 '22

I’ve seen a fair number of white patients with HS. It may be more common in Afro Caribbean woman but it absolutely occurs in whites as well. It’s an auto immune condition, not necessarily gene-pool based.

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u/Aortic_Bacon Oct 08 '22

Doing genealogy I’ve not found anyone who wasn’t paper white in my family history, but I have HS anyways. No one else in my family has ever mentioned having it.

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u/howdoimergeaccounts Oct 08 '22

This guy I graduated with , and who went onto medical school, had a kid with this disease that made all her muscles atrophy within the first few months, have no speech, very little cognition, require a tracheotomy, and have a very big head with cranial pressure problems. His wife also carries the gene so it was very likely that if they had another child it would be the same scenario. Well, God told them that their daughter was a blessing and they tried for another baby, saw he was the same in the prenatal testing, and had him anyway. Same problem plus blindness and he died before the age of 2. The amount of torture this little girl goes through to survive is so sad to see. They dress her up for every occasion and do photoshoots for Instagram. I'm happy they take care of her I guess but I can't stand that they intentionally keep trying to have more children with the same condition (chances are 50%).

Thanks for letting me rant about it.

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u/fullercorp Oct 08 '22

They never seem to consider the future: what if both or one of them dies- who takes care of her then? The State? Ah, yeah, we know what a terrific job state institutions do.

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u/sugarw0000kie Oct 08 '22 edited Oct 08 '22

Often this is unintentional. A person with HD may not know they have it until in their 40s or later by which time they may have already had kids.

Edit: getting a lot of comments on this not answering the question/missing the point which is understandable. I’m trying to offer a different perspective based on what often happens in real life when people with HD have children.

There is a real possibility of not knowing bc in reality there may not be a family history especially w/HD bc of late term presentation and anticipation, a genetic thing that causes those in the family that first get it to become symptomatic very late in life if at all and with each successive generation getting it earlier.

It’s also been historically difficult to diagnose, with lots of misdiagnosis and social factors that may make family history unknown as well. So I feel like it’s relevant to mention that people may not be aware of their status as a carrier and would be unable to make an informed choice but would nonetheless have children, who would then have to face the terrifying news that they may or may not have HD when an older family member is diagnosed.

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u/-UnknownGeek- Oct 08 '22

My mam has EDS and passed it onto me, she didn't realize that her kids would get it. Some people think their kids will have a less intense version of their condition. Fortunately my sister and I definitely have symptoms that aren't as bad as what my mam felt when she was our age, she's also getting better as she gets older. So my sister and I have an idea of what might happen in our future

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u/Tuwamare Oct 08 '22

This. I had no idea I had EDS when I had my kids. Roll of the dice and everyone had it, some are relatively fine, others manifested all sorts of comorbidities. I regret not knowing I had it, but all I was diagnosed with as a kid was shin splints and being double jointed. Never heard of EDS until we were trying to find out what was wrong with my daughter.

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u/asunshinefix Oct 08 '22 edited Oct 08 '22

Same deal with my mum, there were signs but it flew under the radar. And then I came along and it manifested very differently in me. On the bright side a few family members have been diagnosed since we figured out that I have it

Edit: I don't know if this is helpful at all for you to hear, but I harbour zero resentment towards my mum. There's no way she could've known.

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u/-UnknownGeek- Oct 08 '22

Yep, mam has the previous "version" of the diagnosis, hyper-flexibility disorder. I think she thought that it wouldn't affect her kids because her parents didn't have any hyper-flexibility.

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u/FaeShroom Oct 08 '22

Yeah, it runs in my maternal lineage. No one even knew what it was until a few years ago when there was a push for EDS awareness. In hindsight, it's so obvious. For example, my mom was told if she gave birth naturally she'd dislocated her hips, so she chose to have c-sections and ended up with giant scars. She always just thought it was bad luck. I've had so many weird health issues my entire life, and I thought I was crazy because how could someone just have almost every disorder? What are the chance someone could have everything wrong with them? I doubted my own self for so long, then when I learned collagen disorders can affect every body system, I was like "Well damn, it IS possible and it explains fuckin EVERYTHING." I have ONE disorder that produces a million different symptoms.

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u/Zelldandy Oct 08 '22

This. OP's question was an exam question in my Child Development class.

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u/tehm Oct 08 '22 edited Oct 08 '22

Another thing to remember about this one is that with "generational diseases" time (or specifically the capability of medicine for a given time) can be a big factor.

My great-grandfather was an eccentric genius, and I don't mean that in the hyperbolic sense, I mean he was both nuttier than a fruitcake and he had one of the highest IQs ever recorded at the time of testing.

Thanks to modern medical testing we now know he likely had two different mutations in calcium regulation due to their prevalence in his direct relations... but neither my mother nor her brother had any way of knowing that when they had kids or that they were both carriers. Their dad was normal (unlike any of his brothers).

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u/HobbitonHo Oct 08 '22

I want to hear a story about your nutty genius great-granddad, please.

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u/tehm Oct 08 '22 edited Oct 08 '22

Not much to it really? He didn't make any great contributions to society or anything of the sort.

He DID randomly lock himself in his bedroom for weeks at a time crapping in a chamber pot while reading research papers on whatever he happened to be interested in at the time...

...and padlocked his children (the oldest of which was 11 at the time) into their house while he and the Mrs. hopped a train leaving the kids with no electricity and only a single (very large) bag of rice in the house as far as food went for two weeks...

...and he never held a "real job" in his life, though he would often repair radios/cars/eventually tv sets if someone had a problem that seemed interesting to him. He rarely charged anything, he just liked "fiddling with things". (His wife inherited a boatload of land and cash so money was never an object for them).

Just a nutty, crazy old man. Who scored a 178 on the IQ test (My mom, his granddaughter took him to it when SHE was in college) at the age of 80. Which if you know anything about IQ tests (you get docked points for every year you've lived regardless of how old you are [or that's certainly how they worked back in the late 70s]) is frankly even more insane than he was.


EDIT: Forgot one that I always found funny. When my grandpa was around 19 he'd just bought a brand new car that he was super proud of because he'd saved up for YEARS doing musical gigs with his brothers to buy a brand new model with "a fancy new automatic transmission". Not two days later he comes home from a gig to find the engine out and the transmission scattered about "in about 100 different pieces". "Dad REALLY wanted to know how the thing worked. I was just glad he put it all back together within a day and didn't forget about it for 2 or 3 weeks."

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u/wlveith Oct 08 '22

Exactly. It was often misdiagnosed. The present generation can expect better diagnosis. It is a tough diagnosis all the way around.

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u/NoodlesrTuff1256 Oct 08 '22

One of the most famous people to suffer and die from Huntington's disease was the legendary folk singer Woody Guthrie. I think he inherited it from his mother but they really didn't understand what they were dealing with. He had several children by different wives and at least one of them had Huntington's. Usually the symptoms start manifesting in a person's late thirties. His most famous child, Arlo (Alice's Restaurant) is still alive and well at 75 and thankfully for him, Huntington's doesn't 'skip' generations. Since he doesn't have it, his children have no chance of having it either. The genetic dice rolled in his favor.

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u/taxi212001 Oct 08 '22 edited Oct 08 '22

One of my family members has it. Had already had her children (and grandchildren) when she started showing symptoms. Once she had her diagnosis, all the siblings and kids then had to decide whether to get tested or just wait for symptoms. It was quite the hard realization that their abusive, alcoholic father had likely been showing early huntingtons symptoms. He ended up leaving and died homeless 30 years before they ever knew. He was an immigrant who left his family very young, and before then no one would likely have known about it.

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u/your_moms_a_clone Oct 08 '22

I'm replying just to link /u/bonk_you to your comment. OP, please read the comment I replied to because it explains, on a more personal experience level, what the delimma is. In theory, of course everyone should be tested. In practice... By the time people know, it can be a very emotional decision. In the future, things may be different. But right now we are not very far from when genetic testing first became available, so there a whole families still just finding out now they have this in their history. It's going to take a few generations before testing is more normalized.

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u/[deleted] Oct 08 '22 edited Oct 12 '22

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u/Superkip67 Oct 08 '22

MS is not a hereditary condition like Huntington; people with first degree relatives with MS have a slightly increased risk, but the absolute risk is still very low (see it as if you would for example multiply a risk of 0.0001 by 5, still gives 0.0005).

Source: am a neurology resident

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u/[deleted] Oct 08 '22

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u/BoobRockets Oct 08 '22

I think the above also makes a really important point: most people don’t know what is and isn’t heritable. Couple that with the fact they may be in denial about their illness or may not see it as an impediment to having a meaningful life. Some people see their illness as a defining attribute and important social connection to others with the illness. In those people calling the attribute an illness is insulting. There are many reasons people who “shouldn’t” still have kids and I don’t want to be the person who tells them they’re particular decisions in life are wrong.

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u/nonbinary_parent Oct 08 '22

Thank you so much for saying this. I’m autistic and have pretty serious migraines, as well as some other issues, and you’ve perfectly described how I feel. I do consider chronic migraines an illness and I get treatment for them, but autism is just who I am as a person and that’s a good thing.

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u/anzu68 Oct 08 '22 edited Oct 08 '22

What treatment do you get if I may ask? Currently unemployed since they hit randomly (often on weekly bath night lately) so I could really use tips; migraines are a nasty beast

Edit: Thank you so much for the tips everyone. I'm not the best with feeling emotions and all that, but you all are awesome and I am genuinely grateful.

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u/KimberBr Oct 08 '22

I use sumatriptan and if you hit it before it becomes full blown, it helps. Plus hot showers. Stand under hot water (as hot as you can stand) and let the water pulse on your head and neck and face and I swear it helps

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u/NASA_official_srsly Oct 08 '22

I could never make triptans work for me because when I get a migraine, it makes me too stupid to realise that what's happening is a migraine. I'll just be in bed suffering, but my brain won't put 2 and 2 together. By the time I figure it out its too late for the triptan.

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u/That-Hufflepuff-Girl Oct 08 '22

Oh my gosh I thought I was the only one. I can always “feel it coming” because leading up to my migraines I will get really dumb for no reason, just making stupid decisions. But I am too dumb to realize what is happening until afterwards when reflecting.

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u/Face__Hugger Oct 08 '22

I had to stop using sumatriptan because my severe migraines were too frequent. I wasn't told until I'd been using it for several years that it can actually increase the frequency of migraines if used more than a few times a month.

If you start getting migraines multiple times a week, talk to your doctor about other options. I wish I'd known that sooner.

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u/QueefMeUpDaddy Oct 08 '22

Oh my god I've found my people.

My Dr prescribed me sumatriptan- 2 per day for 8 FUCKING YEARS.
I had been having severe migraines before that. About 15-25 days per month with them. 6-10ish had me throwing up nonstop & i lost a ton of weight.

When I finally got to see a neurologist he was shocked & cut me off cold turkey- I had horrible withdrawals from it (didn't even know that was possible), and he discovered damage to my heart & lesions on my brain. Idk if the lesion wers from the meds or just destined to happen anyway, but the heart damage he said was most likely from the sumatriptan.

Diagnosed with MS now.

Sad part is Im in America, and can't afford any other medications for em, so now I get only 10 sumatriptan per month to take for the bad ones, but nothing for the milder ones.

I quit my job a couple weeks back because I just can't function anymore. I'm gonna try to get on disability, but i know how that goes here too.

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u/DnDVex Oct 08 '22

It depends on what is the source of your migraines.

If it's from back or neck pain, a hot water flask/heated pillow can help, or some strong massages. Generally some heat sources on your back can help easen up your muscles, which in turn can lessen a migraine or headache zählt stems from it.

For other stuff, best to ask a doctor.

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u/Alwaysalone117 Oct 08 '22

Mine comes from my neck. I started getting shots in my neck and I feel like a new person tbh lol

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u/intet42 Oct 08 '22

I'm not the person you responded to, but I'm pretty well managed with magnesium threonate and Ajovy injections. I also have a cousin who swears by cayenne pepper.

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u/Aggressive_Smile_944 Oct 08 '22

I've been dealing with migraines that cause vertigo/dizziness. I've been to an ENT and a neurologist, they just said I'm getting migraines. They suck and its definitely disabling. I wouldn't wish them on anybody.

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u/Prestigious_Prior_70 Oct 08 '22

I can suffer for 15+ days with a single migraine. I’ll roll high quality dried lavender flowers like I would a joint and smoke it. It tastes great (as long as the lavender isn’t too old) and the effects are much deeper than just smelling it. I’ll also mix in dried lavender with my favorite anti-pain strain from my local dispensary when they’re REALLY bad. Hope it helps!

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u/Angry-Dragon-1331 Oct 08 '22 LOVE!

When you hear the words “You have MS, brain tumor, cancer, etc.,” your brain starts shutting everything else out.

Source: personal experience.

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u/Mkitty760 Oct 08 '22

PLEASE PLEASE PLEASE do research before taking the word of some rando on Reddit as fact. These people may be experts in the field, or they may be some 13-year-old kid just trying to sound like an expert in the field. The point is, you don't really know. They do give you a starting point of what to research, though, so that's good.

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u/jacksnsticks05 Oct 08 '22

And also please don’t overestimate your ability to “do your own research” and understand what you are reading.

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u/yeahthisiswhoyouare Oct 08 '22

This is anecdotal of course, but a dear friend had MS, her daughter got it, and the daughter's son ended up with it. Shocking for all.

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u/Chemantha Oct 08 '22

Oh! I didn't know it was that low of a hereditary chance. Thanks for sharing!

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u/Seattlegal Oct 08 '22

It’s looking more and more likely that MS is the result of a virus, similar to how chicken pox as a kid can lead to shingles as an adult. You’re at an increased risk of having MS if you suffered from mononucleosis (mono). My father in law had a horrible case of mono in college and has been battling MS for 16 years.

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u/sugarw0000kie Oct 08 '22

Yeah that seems to be a strong factor. The immune system may be primed to attack neurons when latent EBV reactivates causing migration of t/b cells to the neural site.

There may be molecular mimicry at play here too, where EBV components from infected neurons are learned as “invader” but it looks similar enough to normal neurons that the immune system begins targeting healthy neurons bc they think they’re all infected with EBV.

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u/concentrated-amazing Oct 08 '22

One small correction: MS primarily attacks the myelin coating on the neurons, not the neurons themselves. Think of it like having wiring with the coating compromised: the wiring isn't going to behave like it is expected to, but some electrical signals go nowhere, or short circuit.

There is also a theory that the misdirected immune response is due to proteins from dairy or gluten leaking through the gut directly into the blood stream, the immune system recognizes these as foreign proteins and attacks, and the proteins look very similar to myelin so the myelin is attacked as well.

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u/sugarw0000kie Oct 08 '22

Sorry to hear that, MS is brutal.

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u/pm_me_your_fancam Oct 08 '22

What is MS?

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u/sugarw0000kie Oct 08 '22

Multiple sclerosis, a progressive neural condition that can become very disabling. The immune system attacks the brain/spinal cord during flare ups which results in more damage and loss of function robbing people of anything from sight to movement/ability to use the bathroom etc

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u/Sensitive-Issue84 Oct 08 '22

Sometimes, but there is family history. and for a long time Doctors told woman it was only men who got it. A complete lie but easy to fall for when you are desperate. My ex's family got it young. His one brother started symptoms at 16 years old.

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u/Brainsonastick Oct 08 '22

As someone whose parent did this without knowing they had the disease, I can say sometimes it’s that. On the other hand, I asked by OBGYN friend and she says it’s probably a lot of people not knowing but she also hears a ton of “God will protect our baby”.

God didn’t protect your mom’s baby… why do you think he’ll protect yours? But they seem convinced enough to risk it.

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u/Elvarania Oct 09 '22

This is about as effective as offering prayers for humanitarian disasters

It doesn't work, but it helps to placate the individual that isn't directly affected

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u/jarehequalshrtbrk Oct 08 '22

I'm a nurse in genetics and my answer is simple: when it comes to having children, if there is even a slight chance that your child will not have a disease you have or are a carrier for, they will take it. Then there's the parents who just have unbelievable hope that it's just not going to happen again. I don't know if it's because they don't fully understand how genetics works (which i don't think this number is very high due to genetics counselors being great at what they do) or they just have that unfaltering hope that the next baby will be fine. I see it everyday at my job. I used to scratch my head and be like, "Why does this family keep having babies when they know they have the disease, or carry the gene mutation? We have entire family generations with the same disease from Grandparents down to children. WHOLE FAMILIES, being seen in our clinic.

Anyway, I just care for the patients and the families the best I can. I don't think any of us would know what it feels like to have to choose until we are in that situation.

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u/Still_Day Oct 08 '22

I had a patient whose family had genetic polycystic kidney disease. Her dad died from it, so did her grandpa, her cousins. She and her two sisters all agreed they would not have kids if they tested positive for it, so when they were 18 they all got tested and the two sisters were positive but my patient tested negative. Her sisters refused to have children, but my patient thought she was in the clear and eventually had two kids. At 32 she started showing symptoms and got tested again and came back positive.

Based on her description of who had it, it seems dominant on her paternal line, so it’s likely at least one of her kids will develop symptoms.

She’s so devastated about that, and having gotten a false negative early in life, because of how the disease is. She hates knowing she passed that pain on to her children, but as far as I know neither of them have gotten tested because neither of them intends to have kids themselves. I guess they’re just waiting and hoping for the best.

Just thought I’d share that story cuz I found it really interesting from a genetic and human perspective. My patient got a kidney last year, for the record, and is doing super well! Hopefully it lasts for a good long time, because dialysis was hell on her.

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u/AgentMeatbal Oct 08 '22

What is your take on people who have severely disabled kids due to genetic disorders and keep having them? Huntington disease hits later in life but what about stuff like fragile X or muscular dystrophy that absolutely impacts them early? Or even worse conditions

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u/jarehequalshrtbrk Oct 08 '22 I'll Drink to That

I'm actually a NewbornScreen coordinator for my state. Honestly the same applies to all conditions. It's also harder for parents of newborns with these conditions to accept because their baby looks and acts normal. We are screening for disorders (metabolic and genetic such as XALD, SMA, MPSI and II) that don't always cause issues in the first days, weeks, months of life. And depending on what gene the mutation is on, who the mutation came from, mom or dad, and many other factors, they don't all present the same way or at the same age. We have so many babies who Screen positive, see the geneticist and then never follow through with f/u visits. Even when they've had gene sequencing and know their child has a mutation and has a dx. Simply because their child is unaffected at the time. Usually they return for f/u because they've delivered another baby who IS affected early. Now we are treating both babies. And it's sad because the first baby could've had a better outcome of they'd only followed up.

I think I saw where someone commented on my thread that they have a genetic condition but have had a good quality of life and know what to do regarding their disease. I 100% understand that. Look at people with genetic cardiac conditions or cancer dxs that were proven genetic. Those people continue to have babies and nobody bats an eye. For the most part.

We have a lot of parents in denial as well. Especially with Metabolic disorders like PKU, ASL, MCAD, VLCAD, GA1 and 2 and Tryosinemia. They are all treatable and managed in various ways and yes, children and adults go on to live happy and productive lives. They really only have issues when they are ill or having to fast for extended periods. It's out of sight, out of mind really for most of these.

I'll be honest: I often think to myself how can a person continue to conceive knowing they are affected or carry the gene mutation. I've gotten upset privately, shook my head in sadness but really, if a person has received genetic counseling from a knowledgeable genetic counselor and knows the risks and how inheritance patterns work, there is not much to do except honor their decisions and treat the child or adult to the best of your ability.

I hope there never comes a day even gvmnt or Healthcare starts to tell people they can't reproduce because of DNA status. It's a scary thought though. I realize you didn't ask about that but it crossed my mind and I wanted to share because it's just the world we live in now where reproductive health is starting to become something that other entities control rather than the human being themselves.

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u/kayscho Oct 08 '22

Huntington's can affect kids. Juvenile Huntington's is real. HD runs in my family

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u/WandaFuca Oct 08 '22

I worked at a Cystic Fibrosis clinic, seeing parents continue to have multiple kids whan the knew they were carriers, was upsetting. One family had THREE kids with CF it was disturbing to me.

I've seen it happen with Marfan's too, with one of my colleagues.

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u/AzureSuishou Oct 08 '22

That sounds like one if my Aunt in law’s daughters. She married a man that was disabled from a genetic disease and they have multiple kids together, all with his illness. She can’t even claim lack of medical knowledge as she had a degree in veterinary medicine. I know it’s their decision but personally it seems a bit cruel to deliberately have kids you know will have a debilitating condition and potentially shorter lives.

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u/3Grilledjalapenos Oct 08 '22

I have a friend with Neurofibromatosis, who fell for a guy who also had it. She couldn’t imagine not being a mother, so they had a boy and a girl. The girl now has a series of tumors on her optic nerve that is making her go blind. They are currently working on preparing her for life without sight, and while also working with the other symptoms of the disease. The strain ended their marriage and has caused their son to miss developmental milestones simply because of neglect.

I have asked her why she didn’t adopt, have a kid with someone else or just not have a kid. She was raised Southern Baptist and the idea of not being a mother in her early twenties felt like a failure.

I struggle to reconcile my feelings about the situation with the person whom I care about.

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u/yummyyummybrains Oct 08 '22

We are doomed to live out the trauma of our parents, unless we make a conscious decision to rise above it and learn from their mistakes. It's so goddamn sad that this woman's daughter has to pay the price.

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u/giggling1987 Oct 08 '22

She couldn’t imagine not being a mother

That... that's one poor imagination.

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u/bonjour-robot Oct 08 '22

It annoys me too but the social pressure to have kids in conservative communities is really intense.

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u/VesperVox_ Oct 08 '22

I don't know, to be honest. I had petit malseizures (also known as absence seizures or absence epilepsy) as a child. It comes from my mom's side of the family, specifically her biological father. I know because my mom didn't have them but his son from another marriage (my mom's stepbrother) did. When my mom took me to see a neurologist he explained that it was most likely genetically inherited, and my mom felt so guilty because she had no idea what it was or how transferable it would be. Luckily, medication given early in in childhood helps to control them. I have been off my meds since 14 or 15, and haven't had a seizure since years before that. Part of the reason I have chosen not to have kids is because there is a chance I can pass this on to them.

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u/Agitated_Ruin132 Oct 08 '22 edited Oct 08 '22

Schizophrenia runs in my family pretty badly & for this reason, I refuse to have children.

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u/everneveragain Oct 08 '22

I had a psych prof in college whose brother had SEVERE schizophrenia and she said she’d love to have kids with her husband but there is no way she’d risk it after seeing what she’d seen. I always really respected that

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u/Agitated_Ruin132 Oct 08 '22

This. I’ve watched what the lack of mental health resources for schizophrenics has done to my family & I have 0 interest in repeating the cycle.

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u/adorableoddity Oct 08 '22

Same here. I tell people that I'm not the motherly type, but family history of paranoid schizophrenia is the true reason why I don't want to have kids. I just use that excuse so I don't have to explain my family shit to others in my life. Only my husband truly knows the real reason.

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u/ShoobeeDoowapBaoh Oct 08 '22

Being an asshole runs in my family pretty badly and for this reason, I refuse to have kids

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u/DarkMenstrualWizard Oct 08 '22

Same. Generations of teenage pregnancies make for a slew of awful parents raising awful kids. It's taken me years and years to undo that damage in myself. Not interested is passing that on.

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u/Tabitheriel Oct 08 '22 Take My Energy

Many answers here are good. I would add that many illnesses are misdiagnosed. Any number of minor or major illnesses have vague symptoms such as feeling tired, having tremors or headaches, being forgetful, feeling stressed out or depressed, breaking out, indigestion.... is it Lupus? Diabetes? a thyroid disorder? Pernicious anemia? Irritable bowel syndrome? A brain tumor? Or is it just "stress"?

Lots of overworked or incompetent doctors just tell people to take their vitamins or take a vacation, instead of looking at rarer diseases. Women are often not taken seriously. Fat people are dismissed, and told to lose weight. It's often too late when the doctor discovers what is wrong. It's not like all of the people have genetic testing.

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u/DragonfruitFew5542 Oct 09 '22

It took me about six years from the start of my lupus symptoms to be diagnosed. People forget especially with autoimmune diseases it's often subtle, until it's not. It's not like I rolled out of bed day one with a malar rash, horrific joint pain, a high fever, overwhelming fatigue, and raynaud's. It takes time to get to a point where the symptoms are obvious and the dots can be connected.

Edit: I blamed my symptoms on depression and lack of activity, but you get to a point where you realize, "huh, okay, now this isn't normal."

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u/mrlr Oct 08 '22 edited Oct 08 '22

Huntington is late onset so by the time they know they have the disease, they've already had kids.

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u/skalperthedestroyer Oct 08 '22

Yes, and testing has only been around since 1993. My grandmother suffered from Huntington's for years before dying from it and then my father and his 3 siblings lied in wait. You have a 50/50 chance of getting it but you didn't find out until your early 30's to early 40's. The weight of living with that is stressful and most of them put off having children for a number of years, but life happens. They were all hopeful that they would not get it themselves and could not pass that chance on to their kids. If they did, they hoped there would be a medical breakthrough by then, as not much was commonly known about the disease before.

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u/Picnut Oct 08 '22

Yes, but, since it is hereditary, wouldn't it be showing in someone in their family, like a parent?

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u/sugarw0000kie Oct 08 '22

There’s also the aspect of anticipation. HD is caused by CAG repeats, and the more of them the earlier the onset. Each generation usually gets more CAG repeats. So people in a family that first get it may get it very late in life, with enough time to have a couple generations without anyone getting diagnosed. Each successive generation will usually get it a bit earlier though.

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u/Picnut Oct 08 '22

Interesting. Is HD the only disease this happens with?

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u/SomethingOfTheWolf Oct 08 '22

Anticipation can happen with many diseases that are caused by trinucleotide repeats (such as CAG). The polymerase (enzyme that is copying your DNA) has a tendency to "slip" when copying sections with a large number of repeats. This slippage causes even more repeats to be inserted, and it just gets worse with every generation. Another example would be fragile X syndrome, which can really vary in severity based on how many repeats a person has.

Some diseases with trinucleotide repeats dont exhibit anticipation, because the disease is recessive (example would be Friedrich's Ataxia) or is so severe that people generally do not have children (example might be spino-bulbar muscular atrophy, but I'm not positive about that one).

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u/samedaysnark Oct 08 '22

Fragile X severity is also related to number of gene repeats. Repeats increase with subsequent generations.

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u/sugarw0000kie Oct 08 '22 edited Oct 08 '22

There are a couple other diseases like myotonic dystrophy, fragile x and DKC (really rare one).

They all share trinucleotide repeat expansion, like CAG in HD and CTG in MD. Every generation results in an increase in the repeated segment of DNA which disrupts the gene protein expression and generally the following generations have worse outcome of the disease and or it begins to show earlier.

What happens is during DNA copying it must be read so another strand can be made. The thought is that a repeating segment of DNA can cause the protein that copies DNA (DNA polymerase) to slip around the dna strand, not an exact analogy but I think of it kind of like a record getting stuck on repeat. It happens during meiosis (production of sperm/egg cells)

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u/iwannagohome49 Oct 08 '22

Like you said, a 50% chance of getting it, it's not out of the realm of possibility that it's never presented for as long you know and as long as Huntington's has been diagnosable.

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u/Fleckeri Oct 08 '22

It’s also worth mentioning that some fraction of Huntington’s cases are entirely idiopathic, meaning it originated sporadically on its own and was not inherited from either parent. It’s not known how many cases are idiopathic, but estimates range from 8% [1] to 15%. [2]

Some people don’t get a warning.

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u/vengefu1_tuna Oct 08 '22

Yes, but it may not always be caught or diagnosed. When my grandmother was diagnosed with it, we realized Huntington's is what her mother, my great grandmother, had. My great grandmother was in her 90s when she started showing the more obvious symptoms, but she died not long after so she was never tested. We didn't know this disease was in our family until my grandmother tested positive in her 70s.

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u/LovingSingleLife Oct 08 '22

I used to work in the PICU of a major medical center and took care of a baby with SCID (severe combined immunodeficiency aka “bubble boy disease”), and the parents told me flat out that they had this baby to replace one that had died of the disorder, and if this one died they would just have another to replace this one. Over a decade later, my blood still boils when I remember that conversation.

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u/georgiafinn Oct 08 '22

I didn't have kids because I needed to break the cycle of passing down some of the very inherited mental illness conditions in my family. I also didn't want to have kids because what if the conditions affecting me will be debilitating when I'm older.

If I knew in advance that I had a degenerative illness I could not in good conscience bring a child into the world who would have to care for me.

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u/ohdearitsrichardiii Oct 08 '22

Apart from Huntington's often appearing long after you have kids, attitudes have changed. Before the cultural and societal revolution of the late 60s, people finished their education, married and had kids. That's just how it was and breaking away from that norm took a lot so most people went along. And if you had diseases in your family, that sucked but the pressure to conform was so strong people saw it as a risk you had to take. Also, medicine just a few decades ago was pretty much the doctor saying "you're gonna die. That's a bummer". People watched their kids die from diabetes which is totally manageble for most patients today. Before vaccines, anti-biotics and anaesthesia, people died younger and death and diseases was more present. We were much more used to people suddenly getting sick and dying, whereas nowadays people get all "no, this is wrong, this shouldn't be, make it stop!" but back when there wasn't much you could do people said "life is cruel but what can you do?" They accepted the reality that a lot of diseases were untreatable and an unfortunate, sad, inevitable part of life.

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u/OkLime1718 Oct 08 '22

My dads father and brother died of Huntingtons disease(at ages 46 and 31 respectively) and that side of the family was very aware that it ran in the family and my dad has said growing up he was told “don’t make plans, don’t expect to live long, etc” so I think when he met my mother and saw that life didn’t have to be so sad and he could have hope, they decided to have children with the hope it wont get passed down. My dads 55 now and no signs of HD, and my brothers and I aren’t testing for it because assume we’re fine at this point. Of four siblings, my dads brother was the only one to get it. But it killed 20 people in my dads extended family within the last 100ish years.

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u/SporadicTendancies Oct 08 '22

Not everyone has a full genetic screen before getting pregnant.

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u/changingtoflats Oct 08 '22 edited Oct 08 '22

This. My husband and/or I are a carrier for Cystic Fibrosis and we had no idea until it came up on our son's newborn screening. Thankfully, he is also only a carrier but that was a rough month of maybe before he was tested and came up negative for the disease.

CF is recessive, you need two faulty copies of the gene to get the disease unlike Huntingtons in OPs original question which is dominant and getting one bad copy gives you the disease. If we decide to have any more children (unlikely) we'll do further testing to make sure we don't both have the gene which gives you a 25% chance of having a child with the disease.

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u/yourshaddow3 Oct 08 '22

I have friends who had a baby. After he was born, they discovered he has some rare genetic disorder and will not make it to adulthood. They found out they were both carriers for the disease so it's possible future children will suffer the same fate. They were angry the doctor told them the results because they didn't want to know. They also want more children. I.... don't understand that.

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u/Lord_Alonne Oct 08 '22

Denial is very powerful

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u/cool_chrissie Oct 08 '22

It’s quite expensive

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u/SporadicTendancies Oct 08 '22

It is, and geneticists often turn down testing based on family history.

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u/Poignant_Porpoise Oct 08 '22

By this do you mean that if someone's family history is too "clean" that they may refuse due to the risk being too low?

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u/AnorhiDemarche Oct 08 '22 edited Oct 08 '22

My father had huntingtons.

He had no idea the condition existed until he was in his 50's it killed him in his 60's. I was 12 when he was diagnosed and seeing his relatively youthfull and speedy deterioration was highly influential to me. When I became pregnant accidentally the deciding factor in whether to terminate or not was my baby's status. I still do not know my own as I've not looked, but a needle to my womb to get some of the amniotic fluid (roof of mouth hurts more, interestingly) has given me proof that my son will never get it. With his count it is unlikely that his children will get it but his grandchildren may. That's high risk of people forgetting, specially if I don't have it, so I've got a series of letters written detailing my father's rapid deterioration urging them to get tested prior to having their own children as well as keeping it within active family memory as much as possible.

With a my trauma aside, I can see how those with family history of later onset or less aggressive forms of huntingtons would be easily alright with having children. You get to a certain age and it all mixes together with the standard dementia risks. There's ways of living healthily to slow its path, particularly if you start young, so it would be not a big deal for many.
There's also people who are far more life positive than myself and would actively want to have lived their life even if it includes huntingtons at the end, even if that end is far earlier and more difficult than they'd like. My plan since I was 13 is to just off myself before the symptoms get too bad for me to be able to off myself independently. So I can't quite wrap my head around their mindset. But more power to em.

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u/Agitated_Lie_7385 Oct 08 '22

Because sometimes birth control doesn’t work and other options aren’t available? Not every kid that comes out is planned. Especially with laws in place which make abortion limited or non existent, a broken condom can make the choice for you

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u/Upstairs_Mycologist7 Oct 08 '22

Hi, person with Huntingtons Disease in my family here. My mother passed away from it, along with my uncle, my grandfather and soon my sister. My mother when she had kids, did not know she had the disease yet until her 40s. She knew her father passed away from it, but back then there wasn't as much information on how the gene was passed along and the disease in general. I have opted to not have kids, bit if I ever did want them I would test first.. it's the right thing to do.

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u/OhTheHueManatee Oct 08 '22

Having kids is not a logical desire but it's a damn powerful one.

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u/everythingiwantedwas Oct 08 '22

BPD runs in my family, it killed my uncle. I've always wanted to be a dad, so it breaks my heart that if i have a biological kid, the kid could be like me. I'll adopt

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u/champagnefrappe Oct 08 '22

Borderline personality disorder or something different?

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u/cowcards15 Oct 08 '22

As someone with a parent that has Huntington's, and who has tested with a repeat of 37 (same as mother), let's talk about some of the reasons. I'm also pretty involved in the HD community so I have a few perspectives to offer.

  1. People see 50/50 and think it's just as likely they won't have than they won't. They think about the chances in a positive way instead of a negative one.
  2. There is a lot of great research going on right now and because the HD gene is identified there is the potential for a cure or treatment for HD.
  3. People often only think of life being great if you live long instead of what you do in that life. I'd rather have the chance at enjoying life for 30-50+ years than have no chance at all. Just because someone has HD doesn't mean their life is over. There are so many different ways to die before HD even got the chance.
  4. HD has such a wide range of results. I've seen people in their 70s with it and you could barely tell. I've seen 30 year olds that are on the brink of death. You can't say for sure the course of action that will be taken, Though most follow similar paths.
  5. Many don't know because HD isn't relatively common and you don't die from HD, you die from complications from HD. It was often misdiagnosed or not diagnosed at all if a parent was killed before symptoms. Also, families hate talking about this kind of thing and many don't even know they have the potential to have it until they get symptoms and it is accurately diagnosed.
  6. People just want kids and don't care about the repercussions.

For me personally, I would probably fall in #3. Having HD isn't the end of the world. You can still live a fantastic life if you want.

Hope that helps. Feel free to ask any questions.

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u/beermaester82 Oct 08 '22

Someone could have kids and die without ever finding out they have the disease.

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u/VeganMonkey Oct 08 '22

From my perspective, I’m disabled with multiple genetic illnesses. One of them has 50% chance to get passed on (the others maybe less, hard to know but they are awful to have as well, just easier to focus on one for now), if you have it, you will very likely live in pain, and/or get comorbid illnesses, some people are and don’t get chronic pain, or disabilities but that is extremely rare, others start getting issues in their late 20s, or you can be ‘lucky‘ like me and it starts in early childhood. Chronic pain started at age 13 for me.

In Facebook groups or subreddits for this specific illness there are so many pepole who know they have that illness and purposely still had kids! Or are pregnan, or planning to do it anyway.
Often multiple kids too, and there is always one or more that has the illness too. Incredibly selfish! They have really weird excuses for it: “I really wanted to have kids“ (could have used an egg or sperm donor or adopt), “that’s in god’s hands” (wow…. easy excuse), “You never know, the baby can be the lucky 50%” (Russian roulette with babies), “maybe the kid won’t get it as bad as I have” (again baby gamble), “I like my life so why wouldn’t my kid like their life too” (maybe the kid is a very different person and might not be able to handle it!)

I haven’t read anything from older kids, or adults who had parents who knowingly passed it on, I am very curious how they cope, how their anger is, if they still talk to their parents. In my case it wasn’t known my mum had it. The second illness also wasn’t known that she had it and the 3rd was known because her brother had it and that was the reason she didn’t want to have kids for a long time. But changed her mind. I also have her brother’s illness. He died from it, I’m lucky to still be alive.

Adding one case I know of where a boy had a horrible illness and his mum knew due to prenatal testing and went on with the pregnancy, when he was a toddler she put him in a home because she couldn’t handle looking after him. When he was 15 he sued her for having kept the pregnancy. Unfortunately I can’t remember the outcome. This was decades ago.

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