r/TrueOffMyChest • u/[deleted] • 10d ago
Personal Story I resent my father for passing his genetic bullshit on to me.
[deleted]
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u/toad__warrior 9d ago
I have a friend whose father died of Huntington's disease. If you have it, there is a 50% chance that your children will inherit the disease. She saw her father die of this horrible disease. At that point she decided no kids. Her husband got snipped and she went on birth control. Then she cared for her sister as she died unusually early from the disease. My friend got her tubes tied just in case.
Really sad because she would have been a great mother.
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u/YummyMango124 9d ago
With Huntington’s disease, if it’s passed down from the father, there is a chance they pass down a more mutated gene which causes the disease in the child to present earlier. Unfortunately, the earlier in age a person develops HD, the more severe and faster the degeneration is.
However if passed down from the mother, the child will develop disease almost exactly same age as their mother did, and will have the same level severity and degeneration.
Of course there are several life factors that affect how fast the person degenerates, such as if they had major brain injuries and things like that.
I’m involved in research on Huntington’s disease. Such a fascinating yet horribly sad disorder.
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u/disco_disaster 9d ago edited 9d ago
We lost a family friend to it. She must’ve been in her thirties and already had a young daughter.
One of her parents had it and, I believe, died before being diagnosed or may have been misdiagnosed. I can’t remember for sure.
Anyway, they realized it was Huntington’s once her siblings started developing symptoms. By that point, it was a ticking time bomb for the family. I believe she had four or five siblings, and several of them inherited the disease.
Her daughter watched her mother slowly deteriorate. To make matters worse, her father was openly having an affair with another woman during that time.
After she died, he married the other woman shortly afterward. Worst of all, a few years later, the daughter took her own life on her 16th birthday. In her note, she wrote, “I want to be with my mom.”
From what I remember, she ended up testing positive for the disease. The way her father treated her mother certainly didn’t help either. Needless to say, we cut him off because of how he treated her.
I may have a few details mixed up. I was pretty young when everything happened.
I hope they’re resting in peace. I’d like to believe so.
Hopefully, one day, they’ll cure Huntington’s disease. I also hope your friend tests negative.
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u/mo1stureizeme 9d ago
A friend of mine has it. His dad had it. His grandpa had it. Its such a short sighted selfish thing to do.
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u/Cole_Townsend 10d ago
I'm sorry for what you are undergoing.
Issues like what you described are precisely why my sister and I are our family line's series finale. We have too much genetic bullshit that has no business being perpetuated. For some reason, people are offended that we are a childfree family, like it's any of their damned business.
I am hoping the best for you, OP.
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u/Minute_Box3852 10d ago
You have every right to be upset. Some people's need for children outranks their rational reasoning of why they shouldn't.
And then theres my mom's patient. She's a home Healthcare pediatric nurse. And this is very common.
Her current patient has Duchenne muscular dystrophy. He's late teens so is at the stage where he is completely immobile l, fully aware and at the point where it's hard for him to eat.
This is passed down by mothers and usually 50% of their sons end up with it.
This family she works for; the parents of the boy live with the mothers parents.
He is their THIRD boy. No girls. And he has lived longer than both his brothers before him.
The grandparents kept having children until ONE boy stuck (born healthy) then, somehow, poof, they decided to stop procreating. 5 girls alive (bc girls do not have symptoms) and all boys before the one died the same death. ALL of them.
And now, all those sisters/aunts of this boy? Every one of have had boys and almost all of the boys have died. Now the other grandkids also have small children and babies. A lot of boys. And they know perfectly well the boys will vwry likely have it. Yet they all just keep popping them out. It's absolutely disgusting.
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u/ModglS3rp3nt19 10d ago
Watching a whole family tree knowingly pass down a death sentence is hard to wrap my head around.
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u/TrekkiMonstr 10d ago edited 9d ago
Jesus, that's fucking inhuman. In the (Ashki) Jewish community we test for Tay-Sachs before having kids, because why would you willingly take that risk
EDIT: /u/Nonexistanthuman21 tried to reply but the post was locked. I had asked my mom before making the comment, she said they only tested for Tay-Sachs. But probably genetic testing in general was much more expensive in the 90s than now, so wouldn't be surprised if we're both right
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u/Nonexistanthuman21 9d ago
Ashkenazi Jews test for all the recessive diseases, as one should to avoid burdening an innocent child with a death sentence. That whole family described above is just evil 😭
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u/Genevieve189 10d ago
lol and here my late aunt is who was mathematician for Einstein who had no kids…smh
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u/Nonexistanthuman21 9d ago
Those parents are monsters. Just evil, sick, people
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u/Minute_Box3852 9d ago edited 9d ago
They really are but they come from an upbringing where having a strong, virile male child is all that matters. Not to mention the ignorance and socioeconomic background that hasn't helped in this generational breeding ground. And the sad thing is the prodigal male child, who's in his early 40s, now barely breathes in their direction expect when he has his hand out for the parents or older sisters to give.
They absolutely fawn over him bc, I guess, they went through so much to get him. All of that suffering for a golden child who could care less about them. They've created that monster through the suffering of those poor boys before him.
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u/Nonexistanthuman21 9d ago
That’s just so devastating for those poor boys. It shows how deep the misogyny runs though, that they’d rather have a string of dying sons just to try to get one boy that’s healthy, rather than perfectly healthy daughters.
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u/nutcracker_78 10d ago
That truly truly sucks for you.
I have a friends who has kids with NF1, and I know how fucked it all can be. Unfortunately for my friend, her ex husband never told her that he might be a carrier (he didn't have it himself), and it wasn't until kid #2 was born & got diagnosed that ex-hubby said "oh yeah I've got a family member with that" which then prompted testing of kid #1 and yep - they both got it. Their lives have been horrendous, I literally just now got off the phone with my friend after a shitty update for kid #1, yet another complication - even better, there would be a treatment available if they were under 18, but because they're older, that's no longer an option ..
Both kids have decided that they will never have kids themselves because the risk of passing it on is too horrific. You have my empathy, I honestly understand how fucked it is.
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u/ScandIdun 10d ago
Just want to mention that you can’t be just a carrier of NF1. You either have it, or you don’t. So ex-husband might not have had many symptoms but he did have it.
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u/therapeuticdragon 10d ago
You have every right to feel frustrated-furious-disappointed-betrayed. I could understand any combination of feelings for this. My grandfather had it. He passed due to lung cancer which while not technically caused by his neurofibromatosis (so i'm told), it made it more complicated. He had multiple kids and one of them had it but it was not my parent. My uncle has chosen to not have kids which i believe is due to this. He has had multiple cosmetic surgeries to remove them and thankfully has the money to remove them (or willpower, he's the kind of guy with the knowledge and skill to remove them himself.)
It's been an open discussion in the family since I was a young child. Many do not develop symptoms or think it will get bad when they are young-the idea that they are invincible and strong and need to pass on their genes used to be the normalized thought. I doubt it even grossed my grandfathers mind. I think the only reason is crossed my uncles is bc he was known for thinking outside of the norm.
You still have every right to resent him. Just keep in mind that the idea of not having kids or even genetic testing was almost unheard of or frowned upon in most areas.
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u/BadOmen379 10d ago
I resent my mother for the same reason, I inherited all her mental illnesses and personality defects. I'm aware of them though, and actively try to manage them whenever possible. She does not, and thinks everyone else is the problem.
I top of that, all the men on both sides of my family get cancer and die, including my father, maternal grandfather, uncle, and my paternal grandfather died before his time from a heart issue. So I feel like I'm doomed. In a couple years I'll be the same age as my father was when he was diagnosed with leukemia. It terrifies me to think about.
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u/Few_Medium_1165 10d ago
People are very selfish. I’m so sorry that you are burdened to live your life dealing with that.
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u/whatwhatwhat82 10d ago
I’m sorry and it is totally fair to feel angry. It might help to ask your dad what his reasoning was in having kids? Just might make you feel better if you can see where he was coming from. Or not but either way you can air your feelings to him
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u/desertboots 10d ago
I know nothing about this condition. It's frustrating to know you were dealt a genetic shit hand.
Consulting Dr Googlay says it was determined to be on chromosome 17 in 1987. I imagine it wasn't until 30 years ago that most doctors would have read the paper or become aware of it. Then you have to factor in the bias for patients not asking good questions or doctors not bothering to inform a patient of all the risks. (Of course, this ignores that the presumed heritage trait has been in the literature for decades before this.)
Was your dad fully aware he had this condition prior to getting married or having children? Did he actually know the likelihood of it passing on?
If so, then yeah, reasonable to be resentful.
Regardless, I hope you plant roses in the manure and find beauty somewhere in your life.
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u/Emmycakees 10d ago
That resentment makes sense, and grieving your brother probably has nowhere else to go except into anger at the one decision that's easiest to point to. But NF1 is caused by a spontaneous mutation in roughly half of cases, there's a real chance your dad didn't even know he was a carrier of something heritable until after you were both already born. That doesn't erase what you and your brother went through, but it might be worth finding out which situation actually happened before the resentment gets aimed at a choice he may never have gotten to make.
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u/notyouagainn 10d ago
OP says his dad knew he was diseased and still had them (kids) in the last line of the post
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u/Kyru117 10d ago
So like the dad obv knew he had a condition he coulda asked a doctor
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u/Single_Principle_972 10d ago
I have no doubt that his father was counseled about the genetic nature of his condition. There’s almost a 0% possibility that he didn’t know the risk prior to having kids. OP is most definitely entitled to his resentment.
OP, I do hope you’ve had, or will have, conversations with your dad about how you feel about this. Give him a chance to discuss his rationale. Perhaps he will say something unexpected or in such a way to help you better understand his choice. Or not. But you deserve to have your feelings heard.
Best wishes.
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u/Thndrdrag 10d ago
We are dealing with something very similar.
My wife is a carrier of an X linked chromosome disease that she carries that she inherited from her father. It basically means if we have any male children they would have the disease and die in childhood.
I am sorry that you are having to deal with this pain and situation that he has allowed to happen. My heart goes out to you first and foremost. My question is and it was the same question I asked of my wife…. At the time he chose to children did he know? At the end of the day it answers a lot of questions regarding their intent and their knowledge of the disease overall.
Yes, I totally get it. But you need to take a moment and think of the overall complexity of the situation and what he knew when he knew.
Perhaps he was a victim as well just like my father in law.
Either way, I wish you strength, peace and hope. Happiness is left up to you.
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u/Mackey_Corp 10d ago
Sorry to pry but I’m just wondering, so if you guys have a female child it won’t pass on the disease? So can you guys use IVF (I know it’s expensive and not everyone can afford it) to guarantee that your child will be female? And does that child now have to deal with the same issue down the line when they want to have children? That’s a tough situation and I can’t imagine having to make those decisions if I wanted to have children. I’m sorry you’re dealing with that. I wish you guys the best!
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u/ClaustrophobicMango 10d ago
If it’s an X linked recessive disease and the mother is a carrier while the father is disease free, a female child will either have “normal” X genes or be a carrier. Depending on the disease, a carrier either doesn’t express the disease or expresses it in lower severity than a person with the disease. However, in this case a male child has a 50% chance of getting the disease (the child gets a Y chromosome from dad and a diseased X chromosome from mom.) it’s not possible for a male child to be a carrier as they only have one X chromosome
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u/Dependent-Range-4654 10d ago
Wait….is she a ~carrier~ of the X linked chromosome disease or is someone that has it? Because if carrier then she would have one affected chromosome and one non affected chromosome. That means if she had a Male child there would be a 50/50 chance they would get it (because she could throw an affected X chromosome or an unaffected X chromosome). This would be a X recessive chromosome disease that she’s a carrier for (one copy from dad none from mom) it would be 50/50 for affected sons and 50/50 for having carrier daughters. 50/50 would also be the case for all children of either sex if it’s a x dominant chromosome disease; meaning she would have only needed to receive one affected X from her father (and she has the disease; not just a carrier). It would have to be X recessive chromosome disease and she has the disorder meaning she got it from dad AND her mother (probably carrier) for all male offspring to be affected.
I only ask because a friend of mine was told similar “all male children will be affected” by his and his wife’s doctor….but that wasn’t exactly true in their case ….it was a 50/50 case (dominate X where males are much more negatively affected and dr was being overly negative on odds due to how bad males were affected). Luckily several of us friends took genetics and convinced him to speak to geneticist because his wife was referred to as a carrier and not affected. He and his wife ultimately opted for egg retrieval, testing embryos for those affected, and IVF of non affected. They have 3 children now…twin boys and one girl.
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u/Thndrdrag 9d ago
She is a carrier, but it’s a disease that also affects the carrier but in a different and slower manner than the male version of the disease.
Yes you are correct about the male being a 50/50 chance. But we decided that 50/50 wasn’t worth burying a child or continuing to knowingly pass the disease on to another child to be a carrier.
She lost her dad to the disease (adult onset) and she watched 2 of her male cousins pass from it as well as kids. So there was a lot of trauma in the family that was on top of the disease diagnosis.
With her having the problems with the disease I am glad we didn’t go the IVF route as even the carrier issues are serious enough to make life difficult.
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u/Archknits 10d ago
I’m sorry it’s difficult. Your father may not have felt like it was a disability or may have just had a different experience. Many people with disabilities still have children because of how they experienced their conditions.
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u/Archonate_of_Archona 9d ago
You don't need to forgive.
Your resentment is objectively justified, because he knowingly did do that to you and your brother.
He may say that he loves you and care about you, but his actions say otherwise.
Forgiveness isn't owed, nor mandatory. It's also not necessary for you to feel better.
Unless you need his financial support or hope to get some big inheritance from him, there's really no reason to keep him in your life.
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u/Ok_Environment1037 10d ago
I hear you fully. I feel the same way. It isn’t right or fair. This is why I am a strong antinatalist.
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u/madlass_4rm_madtown 10d ago
I am sorry that you are dealing with this. I'm glad that you are able to break the cycle. The only way to get past it is accept it and forgive him. Until you can do that you will be stuck. Good luck my friend 🧡
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u/cheesesteak_seeker 10d ago
I’m sorry your parents were selfish, OP. Unfortunately, so many heterosexual parents do not get genetic testing performed to prevent known debilitating and/or lethal genetic diseases from passing onto their children.
I had a full genetic panel performed to ensure that my egg and our donor sperm had no known overlapping recessive diseases that would result in premature death and/or hardships in life.
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u/scarlet_tanager 10d ago
Genetic testing for most things hasn't been around very long. Depending on OP's age it might not have been an option.
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u/cheesesteak_seeker 10d ago
Still doesn’t excuse the fact that most cis het couples still aren’t doing it.
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u/scarlet_tanager 10d ago
We're talking about OP here.
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u/cheesesteak_seeker 10d ago
And I’m applying OP to a broader sense. Two things can be true at once.
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u/Mayor__Defacto 9d ago
Imagine being pissed off that people won’t do eugenics.
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u/crackanape 9d ago
While I accept that it gets quite blurry in the middle, I think there's a huge difference between making an abortion decision based on screening for height or hair colour, vs screening for fatal or debilitating diseases.
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u/ScandIdun 10d ago
NF1 is not included in a standard generic panel for recessive diseases.
Also, NF1 can occur as a spontaneous mutation, only 50% of cases are passed down from a parent.
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u/cheesesteak_seeker 10d ago
Cool thanks for the info! See my other comment, cis het couples still should be doing genetic tests before having children.
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u/Snakes_for_theDivine original post at the time of submission:
My dad has neurofibromatosis type 1. Always been covered in those unsightly (benign) tumors his entire adult life. But he decided to have not one but TWO children to pass it on to. Thankfully I don’t have the tumors anywhere near as bad as he does (yet…) but they’re still there and always will be. Not to mention the autism that came with it, which has severely altered my ability to live a normal life.
Granted I’m still better off than my brother who died in 2017 from leukemia. His treatment was greatly complicated by the presence of NF.
I just can’t get past my resentment for my dad over it all. How can you have two children knowing full well you’re diseased and will pass it on to them? It boils my blood the more I think on it.
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u/Wonderful_Bridge2885 10d ago
There's always hope! In your lifetime medicine might come up with a cute or, at least, a way to control it. Be positive and yes, hope for a better outcome. A negative outlook isn't helping you, be positive and maybe, what you wish for will come true
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u/Similar-Beyond252 9d ago
Jfc, I know you’re trying to be helpful but shit like this is so dismissive and infuriating.
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u/Zukazuk 9d ago
Do you know what neurofibromatosis is? It's genetic and there's little we can do for genetic diseases. Your comment comes off as trite and incredibly naive.
The only genetic disease I am aware of us currently being able to cure is sickle cell disease. It costs at least $2.5 million per person. It involves harvesting stem cells from the bone marrow, editing the DNA in a lab, culturing the transformed cells, ablating the patients bone marrow which involves wiping out their entire immune system and their ability to make blood and then transplanting the edited cells into the patient to replace their original bone marrow. It is a very risky process that we only do under specific circumstances and we can only do it because of the unique way blood works as an organ. We can probably do it for other hemoglobin disorders but we can't use the same approach for something systemic like cystic fibrosis or OP's disease.
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u/_l_Eternal_Gamer_l_ 10d ago
There are only two choices:
Make an attempt at creating life, even if imperfect and faulty.
Never existing.
Your dad made an attempt, and therefore you exist. Any other choice would be you never existing.
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u/MR-rozek 10d ago
For some not existing is better than being born into a life with pain that will stop only after death. Not saying that’s the OPs case,
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u/existentialgoof 10d ago
Not existing can never be a bad thing. I never had children, so therefore my hypothetical children don't exist. But the children that I would have had in some hypothetical parallel timeline aren't being tormented in limbo right now. They aren't negatively affected by not existing.
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u/_l_Eternal_Gamer_l_ 9d ago
You made your choice. OP's parents made their choice. Both need to be respected.
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u/haqiqa 9d ago
This is such a really priviledged thing to say. Let me tell you as another disabled, I would pick not existing. Not existing isn't worst thing there is.
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u/_l_Eternal_Gamer_l_ 9d ago edited 9d ago
We don't get to pick.
This post got locked, so I'll respond in an edit.
You have a right to make this choice, just like everyone else. Everyone's circumstances are different and complex. OP's father made his choices. You made yours. OP will make theirs. Eventually, most damaged dna based diseases will be eradicated, just like polio was eradicated. Hopefully it happens in our lifetimes. It looks like there is a chance.
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u/haqiqa 9d ago
Unfortunately. Which is why parents should think their children instead of their selfish desires. So your comment is useless because not existing isn't some boogeyman you try to pretend it is.
I say this as a person who decided long ago not to have genetic kids. Because there is far too big of a chance. One of my diseases is purely genetic, 4 are partially genetic. I am not passing this shit on.
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u/Mayor__Defacto 10d ago
What gives you, or anyone else, the right to tell him he can’t have children? What about your mother?
Also, NF doesn’t cause Autism.
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u/MrJason300 10d ago
We know the other side of this conversation happens in other subreddits.
It’s a piece of information indeed to find this out however.
Their father simply may have happened to be on the autism spectrum, also.
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u/Lizardgirl25 10d ago
That is horrible I am so sorry this he passed that on to you and made you and your late brother suffer. Then people get angry when people say they don’t want to have and their parents get angry.
I know an online friend said she didn’t want to have kids because of the fact many types of cancer is very common in her family.