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Woman Learns A Secret Parents Have Been Hiding For 28 Yrs, They Beg Her Not To Tell Her Siblings
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Woman Learns A Secret Parents Have Been Hiding For 28 Yrs, They Beg Her Not To Tell Her Siblings

Woman Learns A Secret Parents Have Been Hiding For 28 Yrs, They Beg Her Not To Tell Her Siblings“It’s Hereditary”: Parents Furious After Daughter Exposes Their Lies To Her Siblings“No Cure, Nothing”: Woman Wishes She’d Never Been Born After Learning Her Parents’ SecretWoman Furious Her Parents Hid Incurable Hereditary Disease From HerParents Furious Daughter Told Her Siblings About Her Hereditary Illness They Already Knew AboutWoman Goes LC With Parents After Learning The Devastating Secret They Kept From Her For 28 YearsWoman’s Diagnosis Means Her Life Is Ruined, She’s Upset Parents Hid That The Illness Is Hereditary
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We all are, unfortunately or sometimes fortunately, subjected to suffering the consequences of our parent’s choices. Where you live, what you eat and what you look like is generally decided by the life your parents put together. But for some, this genetic legacy goes beyond eye color and facial features.

A woman wondered if she was wrong to call her parents selfish for having her when they knew there was a high chance she would inherit an incurable disease. We reached out to the woman in the story via private message and will update the article when she gets back to us.

Hereditary diseases are generally pretty predictable

Image credits: Pavel Danilyuk / pexels (not the actual photo)

But one woman learned her parents had been hiding a serious condition from her for years

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Image credits: Sarah Chai / pexels (not the actual photo)

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Image credits: RDNE Stock project / pexels (not the actual photo)

Later she clarified some things in an update

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Image credits: Quirky_Background838

Huntingtons is a true nightmare disease

For those who are not familiar with Huntington’s, consider yourself blessed. It’s a neurodegenerative disease that is incurable and is in almost all cases inherited. It can be hard to detect if one’s family hasn’t been diagnosed with it, as symptoms start to manifest after the age of thirty, although they can show up as late as fifty.

Generally, Huntington’s manifests as a gradually worsening ability to control one’s movements. Over time, the person ends up having difficulty swallowing and speaking, while, simultaneously, cognitive abilities also decline, often going as far as the person having dementia. It’s a horrible disease, made worse by the fact that there is no cure, just the assurance that it will get worse.

If your family is predisposed towards Huntington’s and you don’t have it, it means you won a literal coin toss, as the risk is almost perfectly 50%. These are pretty terrible odds, particularly if you are dooming a child to go through life without knowing if the condition is going to strike in their thirties or forties.

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Image credits: Pavel Danilyuk / pexels (not the actual photo)

Living with the knowledge of a terminal illness is very hard

This is perhaps why the woman’s parents didn’t want to tell her, as Huntington’s can be very hard to diagnose until the symptoms start. In other words, you can go through almost three decades worrying about something without knowing. There is some argument for not telling someone, but, as this story demonstrates, a painful truth is probably better than living a lie. It can be very hard to talk about, but the consequences of avoiding this conversation are even worse.

After all, the woman in the story herself admits that she would not have a kid if she knew. As difficult as it seems, it’s generally for the best if people can make arrangements for their life early, not have this devastating news sprung on them. The other issue is the fact that the parents decided to have kids at all. Unfortunately, we won’t be able to hear their reasoning, but there are really not a lot of “good” reasons to have multiple kids when you risk perpetuating something like Huntington’s.

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Image credits: cottonbro studio / pexels (not the actual photo)

Calling one’s parents selfish is a controversial action

While in some cases, it’s possible that people were not aware, as Huntington’s does share symptoms with other, highly debilitating neurodegenerative diseases, but in this story, it would appear that the woman’s parents knew what was happening. Even then, taking responsibility is a normal part of being a mature adult. They understood the risks and decided to have kids anyway. Not adopt, not give up their dreams of having children, they just went on with their lives.

Even worse, they didn’t have a plan to explain the risks. They just hoped for the best and were caught off guard after one of their children did a little bit of digging. This is perhaps very human, as most of us struggle to face hard truths, but it’s also ultimately selfish. The question of “is a parent to blame for the existential suffering of a child?” is one that humanity hasn’t really answered, but that isn’t to say that this woman can’t call her own parents selfish.

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Image credits: Pavel Danilyuk / pexels (not the actual photo)

Most thought she was absolutely in the right

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But a few sided with the parents

Others shared similar stories

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Justin Sandberg

Justin Sandberg

Writer, BoredPanda staff

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I am a writer at Bored Panda. Despite being born in the US, I ended up spending most of my life in Europe, from Latvia, Austria, and Georgia to finally settling in Lithuania. At Bored Panda, you’ll find me covering topics ranging from the cat meme of the day to red flags in the workplace and really anything else. In my free time, I enjoy hiking, beating other people at board games, cooking, good books, and bad films.

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Justin Sandberg

Justin Sandberg

Writer, BoredPanda staff

I am a writer at Bored Panda. Despite being born in the US, I ended up spending most of my life in Europe, from Latvia, Austria, and Georgia to finally settling in Lithuania. At Bored Panda, you’ll find me covering topics ranging from the cat meme of the day to red flags in the workplace and really anything else. In my free time, I enjoy hiking, beating other people at board games, cooking, good books, and bad films.

Gabija Saveiskyte

Gabija Saveiskyte

Author, BoredPanda staff

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Hi there! I am a Visual Editor at Bored Panda. My job is to ensure that all the articles are aesthetically pleasing. I get to work with a variety of topics ranging from all the relationship drama to lots and lots of memes and, my personal favorites, funny cute cats. When I am not perfecting the images, you can find me reading with a cup of matcha latte and a cat in my lap, taking photos (of my cat), getting lost in the forest, or simply cuddling with my cat... Did I mention that I love cats?

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Gabija Saveiskyte

Gabija Saveiskyte

Author, BoredPanda staff

Hi there! I am a Visual Editor at Bored Panda. My job is to ensure that all the articles are aesthetically pleasing. I get to work with a variety of topics ranging from all the relationship drama to lots and lots of memes and, my personal favorites, funny cute cats. When I am not perfecting the images, you can find me reading with a cup of matcha latte and a cat in my lap, taking photos (of my cat), getting lost in the forest, or simply cuddling with my cat... Did I mention that I love cats?

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Nadine Debard
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

The YTA are beyond stupid or ignorant. How could the parents be so selfish to not even inform their children before they started conceiving themselves. Lying about relatives diseases. Justifying all this c**p by belittling their daughter. I couldn't forgive them. Huntington disease is DOMINANT. Just one copy and you're doomed.

Nimitz
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These people are completely f*****g ignorant. It's a terrible degenerative disease with a 50/50 inheritance rate. Lifespan cut in half. And the last 10 years of your life are a slow and personal horror as you lose control of both your body and your mind. These parents ARE terrible people, especially since it can be addressed via egg/sperm donation.

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TruthoftheHeart
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I have always thought that people who force a child to be born knowing that they will likely have a condition or deformity that will greatly affect their life and do so anyways are just being selfish and fulfilling their own desire to be a parent instead of thinking about the future of that actual person they are bringing into the world.

tori Ohno
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is why we need to fight for our reproductive rights. They even want to ban contraception here in America now! It should be our right to make these choices, because it not only affects us, it affects our children if we're for rd to have them.

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Janelle Collard
Community Member
Premium
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Not only did those parents have just one child, they had THREE. Good thing OP told her sibs, esp. since bro + his fiancee are trying for a baby. LC or NC is the right choice to deal with those selfish parents.

Ms.GB
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

And they sat back and watched 2 of their children have children/try to have children knowing that this horrible disease can be tested for beforehand and they could have healthy children through IVF. Now not only are their children going to possibly have this disease but they may have to watch their children (grandchildren) suffer.

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Yvonne Dauwalder Balsiger
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

YTA as unhinged as ever. Yes, we will all be dead in the end but I personally would prefer to die in my sleep without years of terrible illness before that, thank you very much. Huntington is not like a strawberry allergy or something and her parents knew before they had their 3 kids

Bernd Herbert
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Couldn’t believe what I actually read there. „You should have gratitude for life“…f**k off, will ya?

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Kate Johnson
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

People who have Huntington's in their genes should not have children. It's nothing but selfish. This is a horrible, fatal disease and to willingly inflict it on someone else because you want to parent, make you a scumbag, unworthy of children. This is a 50/50 chance for the kids. It's disgusting. If I was the gal, I'd absolutely MAKE SURE i told all the younger children. They should not that their parents are NOT trustworthy people and they need to look out for themselves.

Bernd Herbert
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I think every parent is having kids for selfish reasons. But having kids with a hereditary awful disease is igorant ans irresponsible

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Paul Rabit
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Parents wanted to wait until the "right time". THERE IS NO RIGHT TIME.

Alro
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Knowing one's medical history on something hereditary should be a basic right. Which means, on the other side it should be mandatory to inform when you know.

Guess Undheit
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

And people get pissy when I describe some "parents" as breeders. Those two are the textbook example. They KNEW it was a death sentence, they KNEW it was hereditary, they CHOSE to breed and have three kids, and CHOSE not to tell AFTER a least one kid was born. Huntington's is one of those diseases that makes people go to the Centre of Expertise on Euthanasia in the Netherlands. Maybe the "parents" should visit.

Captain Grump
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Doctors and mental health professionals are required, by law, to inform the authorities if they believe a client/patient might harm themself or others. Informing the siblings may not be legally required, but sure as heck has the same moral underpinning. And having children when you know there's a 50% chance of suffering and early death is evil - not informing them needs a new word that's harsher than evil.

Agat
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It's the same as not disclosing you're HIV+ before being with someone physically. Completely unacceptable.

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Crescent 3
Community Member
2 weeks ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA. I have Sickle Cell Trait (which is different from Sickle Cell Disease). When I was about to get married, one of the things that I made sure we did, was to have my wife-to-be tested to learn her Sickle Cell status. She had neither the disease nor the trait. That was important, because if she had the trait as well, we likely would have chosen not to have children. Sickle Cell trait is a recessive gene. When two people with the trait have a child, there is a 25% chance that the child will develop Sickle Cell Disease and a 50% chance that the child will have Sickle Cell Trait. I've watched people struggle with Sickle Cell Disease and I've watched as friends buried their 21 year-old daughter who died from the disease. As it is, we have two children. We had them tested at birth. One has the trait, one does not. You and your siblings deserve to know. That isn't your parents' secret to keep.

David
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

There is a reason why in the Jewish Community many people do genetic testing before marriage, bc of genetic diseases to make sure the couple are not both carriers

Joelle Jansen
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I can somewhat understand the idea of not telling them while they're children, because yes, the not knowing is awful. But they should've at the *very least* told them before they had children! There's even some places that allow you to have IVF with embryos that definitely do not have Huntingtons, without telling you whether you tested positive or not, if you don't want to know.

Fellfromthemoon
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

1. Jonathan Swift had never married because his father had a mental disease, and he believed he might have inherited it. Swift didn't procreate to not pass on the suffering. 2. Adoption still exists. 3. We all carry different genetic conditions that may or may not lead to severe consequences before we reach old age. The list includes type 2 diabetes mellitus, many forms of cancer, high blood pressure,even schizophrenia, etc. Usually, the inheritance rate is around 40%. There isn't any blanket decision. As available treatments are continuously developed, the rational decision 30-40 years ago was different than now. 4. Look for early symptomes, get tested and hope for the best. And if you believe your condition won't be manageable in a few decades, consider adoption or embryonal genetic testing.

Evagating Beewolf (she/they)
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

To the AH "parents": if Jonathan Swift, before genetic testing, voluntarily decided not to have kids, the least you can do is inform yours.

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Angela C
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

A friend of my sister's has Huntington's, her bio mom and brother both died young from it (in her family it hit them a lot earlier than normal). She's in her mid 20s and she's probably not going to make it to 30. But guess what? She had a kid. He's like 3 or 4 at this point, she was fully aware of her condition before she had him, and not only is he going to end up losing his mother at a young age, he might have a similarly short lifespan himself. And I fully judge her for knowingly bringing a child into that situation. OP's parents are that same level of selfish. And OP should get her son tested as soon as possible. The results might not be what she wants but in this case it's better to know. Plus she's now in a position to inform her son of his risks (if any) of passing it along, once he's old enough to understand.

Evagating Beewolf (she/they)
Community Member
2 weeks ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

it's possible they had a kid via the ivf others mentioned where you can be sure your kid doesn't have it. edit: obviously still bad to lose your mom so early, but it's not necessarily that the kid has a risk.

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Heather Barrera
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My parents told me. I have always known that my dad's mom had Huntingtons. I grew up knowing my dad might have Huntingtons. My grandfather told my mom after she was pregnant. My father did not know about it until my mom told him. I watched my dad's siblings and cousins get HD. Nobody told them. I was the only one who knew about it. I could tell that all of my cousins were showing signs. I am the oldest of the cousins. In my family, the men show symptoms at earlier ages than the women. My repeats are both on the threshold. I am 60 now and am pretty sure I am starting to show signs. I was told by mom at 4 years old.

arthbach
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

A family member (not my blood relation) was diagnosed with Huntington's around 55 years old before the genetic test was available. The GP (family doctor) had been made a house call, and saw Peter, and hadn't been quite sure what was wrong. His son (John) came into the house whilst the doctor was there, and the doctor saw similar sets of symptoms between the two of them. That's when he put "2 and 2 together". Peter and John died months apart. It was utterly horrendous when the genetic testing became available and people had to decide whether to take the test or not. Within that side of the family, it was decided anyone who was thinking about starting a family MUST be tested, as none of them wanted to pass this down to future generations. It had already caused to much grief.

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LB
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I used to be mad at my folks for not testing for our genetic muscle disorder earlier. I am 34, and I have a pacemaker. Thanks a bunch... My grandma died of the same thing before I was born, but I'm not 100% sure they *could* have tested back then already. I'm not mad anymore. At least I know now, and I am mostly grateful medical science has progressed to the point that my dad is still alive when he should be dead, and I will likely live until retirement and then some - although I wonder if I'll make it to 80, or even 75. I'm not going to have bio kids anyway (gaaaaay) and luckily the sister with the strongest child-wish is negative. But my brother (positive) has potentially passed it on to his kids, who are also at risk of inheriting another muscle disorder from their mom... it's a hot mess.

FreeTheUnicorn
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Testing was readily available for Huntington's 30 years ago, and if her parents had disclosed family history, the check would be automatic, so they not only knew it was possible, but knew for sure that she had the gene. They knew the odds of passing it on, and didn't look to adopt or have IVF because they didn't really care. And now they still don't really care, they just don't want hassle. The evilness of some people is astounding. Especially the father, he witnessed what the disease does and still thought, I don't mind if this happens to my kids.

Alexandra
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is beyond selfish. If you know you have a hereditary illness that's incurable and even if you don't have some genetic disease some people choose not to have children. Please shut up about having to be thankful for life and being in good health now. No one asks to be born so there's no need for gratitude and even if you make it to your fifties in good health, is it worth the agonsing decline? Having you, your children and spouse going through that? Children knowing that this could also happen to them? Yes, there is pre-natal screening for Huntington, but can you imagine the mental burden of that? And then having to decide what to do when Huntington is detected? CRISPR is a good thing, but there is as yet no approval to use it to remedy Huntington's. There so-called parents more or less condemned their children and their children to living under Damocles' sword. Beyond selfish.

Ell Bee
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

From this poor young woman's reaction, I thought immediately that her family had Huntington's Disease. We have that in my family. My grandpa, father, and sister all died from it. We took my sister in to care for her. It is an awful, awful disease. None of my family was diagnosed or knew what it was until 2018 though. (We thought that my father had frontal lobe dementia and Parkinson's.) Many now are facing the possibilties of having inherited it and passed it on. I was one of the lucky ones who did not inherit it. We are still waiting to hear if my brother has it. The blood test for diagnosing Huntington's has only been around since 1993.

René Sauer
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

s****y move from the parents, but does OP have grounds to sue them, like one commenter suggested? What would the charges be?

Jasmijn
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I have a hereditary disease called vEDS (which my mum had no idea was even in her genetics as it’s rare, so I don’t blame her), which is not as cruel as Huntington’s, but I’ve decided not to have biological children because of the 50% chance of passing it on. Huntington’s is such a cruel, brutal disease and I think it’s entirely selfish to knowingly take that risk of cursing your child with it. There are other options to have children, you do need to pass on your genes. But then electing not to tell your bio children that they’re at risk of such a disease? Unforgivable. They’ve spread it to their daughter and now there’s a possibility their grandchild will have it too. Congratulations, well done to them, they’ve doomed their family to suffer from a wretched, debilitating disease.

Cee Cee
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I worked with someone at risk of Huntingdon's. He didn't want to get tested, fair enough. However he got married and they were trying for a baby still without testing. I couldn't believe it or that his wife seemed to be OK about it. Me? I'd test so if necessary I could make plans.

Deborah B
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I completely understand protecting your child - when they're a child. But once they're old enough to make life decisions, they need to know. You have the right to choose to be tested or not, to marry or not, to get genetic counselling and check whether your partner is a carrier before you conceive a child. To have IVF and screen for it, rather than taking the risk. To not have to face your own child knowing that you have a hereditary disease that will steal your future, and that they may have inherited. They owed you the information, so that you could make your own informed decisions about your health and your life. I'm so sorry. This is completely unfair of them, and you have the right to be angry.

Yayheterogeneity
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

God, what a horrible awakening. I seriously hope she didn't pass it to her son. How terribly selfish of her parents. How could they lie??! And lie time and time again. Unforgivable.

Sojourner
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

As someone who has coped with severe depression and have seriously at one point CONSIDERED TAKING MY OWN LIFE? NTA all the way. Why couldn't I have died when I was a baby?

Lee Banks
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

They at least should have told OP when they realized their daughter was in a serious relationship that might lead to children. Truly selfish.

SnackbarKaat
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My friend doesnt have it herself, but can give the gene of an illness to her kids. A non curable disease. She decided to have children and not get them tested. I don't know why she did it this way.. the nurses didnt understand either. I don't know what to think about it

Panda Kicki
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thats what donated egg, sperm or embryos are for. I carry a gene that I dont want to pass on and donation is great to bypass it.

CBolt
Community Member
6 days ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA The parents have been horribly selfish & cruel. When was going to be "the right time" to tell their children? When one started having symptoms? Everyone has a right to their medical information so they can make decisions & plans. As an aside, my co-worker's wife died from Huntington's in her 30s. Most of her siblings got tested but 1 absolutely refused to - said she'd rather not know, which is of course her right. Opinions on that decision, anybody?

Red Skye
Community Member
1 week ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

WHile I think they should have told ALL their children, as soon as they were old enough to breed, and explain very thoroughly what it means, and give them the choice to either NOT breed, or go through IVF, I think you and others should say if you wanted kids, then you should have adopted, but NOOOO, these people absolutely MUST produce 3 kids who have their KNOWN to be defective genes, and in at least one case, already passed them on.

Susical
Community Member
1 week ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I don't get the YTA people at all. I'm just so glad OP may have stopped her brother from having a child - or at least given him the chance to make that decision with his eyes open.

Beth Wheeler
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These parents are idiots, they lied about what the aunt died of, never told their kids this is in the family. Stood by while the daughter had a baby, the son and his g/f want to have kids and have the audacity to get mad at her when she tells her parents she has it and oh yeah it's in the family. Their kids are rightfully royally pissed off at them and the parents are mad that this lady told them. These idiots never planned on telling their kids about this. They condemned them and the grandkids to the high chance of a horrible disease and slow death. I would really love to just slap the hell out of them for this. I can't even imagine doing this to my kids. I would have either used egg or sperm donor, adopted or not had any.

Joe Bloe
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Is life worth living knowing you could have a deadly disease?? I guess a lot of people would say no, the majority here in fact. I think I would say yes. Maybe you would not get it, maybe a cure will be found in the next decades after you have children. The moral question is tell them or not? By the way she reacted, I guess a lot of people could take it really badly.

Jaya
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Having a kid when you know the kid is quite likely to suffer, is selfish. But whether you tell the kid or not, is a difficult situation. The truth is, there is no right way to handle it. Many people who have not been told by their parents, say they wish they'd been told, because they could have made informed decisions and not be blindsided. And many people who have been told by their parents, say they wish they hadn't been told, because they live their whole life in fear and wished they could have just lived a normal life so far. Both choices suck, there is no good choice.

OpheliaPoe
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA. Everyone has a right to know their medical history and how it will affect their wellbeing, lifespan, and the possibility of passing a fatal disease to potential offspring. If this information is known to anyone the person with the condition has a right to be informed. This reminds me of those tests they used to do on POC, the poor, those in orphanages, people in 3rd world countries, those that had been institutionalized, etc... Those people had no clue they had a disease and lived their lives as though they didn't. They deserved to know, to be able to make choices accordingly, to plan for a difficult and shortened lifespan. OP's parents treated having children as an experiment: "Let's see if they get it or not. We hope they won't but we're not going to tell them they're at risk, get them tested, or treat the suspected disease." Maybe they foolishly hoped a cure would be found by now but that doesn't explain or excuse the withholding of literally vital information!

Nadine Debard
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

The YTA are beyond stupid or ignorant. How could the parents be so selfish to not even inform their children before they started conceiving themselves. Lying about relatives diseases. Justifying all this c**p by belittling their daughter. I couldn't forgive them. Huntington disease is DOMINANT. Just one copy and you're doomed.

Nimitz
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These people are completely f*****g ignorant. It's a terrible degenerative disease with a 50/50 inheritance rate. Lifespan cut in half. And the last 10 years of your life are a slow and personal horror as you lose control of both your body and your mind. These parents ARE terrible people, especially since it can be addressed via egg/sperm donation.

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TruthoftheHeart
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I have always thought that people who force a child to be born knowing that they will likely have a condition or deformity that will greatly affect their life and do so anyways are just being selfish and fulfilling their own desire to be a parent instead of thinking about the future of that actual person they are bringing into the world.

tori Ohno
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is why we need to fight for our reproductive rights. They even want to ban contraception here in America now! It should be our right to make these choices, because it not only affects us, it affects our children if we're for rd to have them.

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Janelle Collard
Community Member
Premium
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Not only did those parents have just one child, they had THREE. Good thing OP told her sibs, esp. since bro + his fiancee are trying for a baby. LC or NC is the right choice to deal with those selfish parents.

Ms.GB
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

And they sat back and watched 2 of their children have children/try to have children knowing that this horrible disease can be tested for beforehand and they could have healthy children through IVF. Now not only are their children going to possibly have this disease but they may have to watch their children (grandchildren) suffer.

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Yvonne Dauwalder Balsiger
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

YTA as unhinged as ever. Yes, we will all be dead in the end but I personally would prefer to die in my sleep without years of terrible illness before that, thank you very much. Huntington is not like a strawberry allergy or something and her parents knew before they had their 3 kids

Bernd Herbert
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Couldn’t believe what I actually read there. „You should have gratitude for life“…f**k off, will ya?

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Kate Johnson
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

People who have Huntington's in their genes should not have children. It's nothing but selfish. This is a horrible, fatal disease and to willingly inflict it on someone else because you want to parent, make you a scumbag, unworthy of children. This is a 50/50 chance for the kids. It's disgusting. If I was the gal, I'd absolutely MAKE SURE i told all the younger children. They should not that their parents are NOT trustworthy people and they need to look out for themselves.

Bernd Herbert
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I think every parent is having kids for selfish reasons. But having kids with a hereditary awful disease is igorant ans irresponsible

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Paul Rabit
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Parents wanted to wait until the "right time". THERE IS NO RIGHT TIME.

Alro
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Knowing one's medical history on something hereditary should be a basic right. Which means, on the other side it should be mandatory to inform when you know.

Guess Undheit
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

And people get pissy when I describe some "parents" as breeders. Those two are the textbook example. They KNEW it was a death sentence, they KNEW it was hereditary, they CHOSE to breed and have three kids, and CHOSE not to tell AFTER a least one kid was born. Huntington's is one of those diseases that makes people go to the Centre of Expertise on Euthanasia in the Netherlands. Maybe the "parents" should visit.

Captain Grump
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Doctors and mental health professionals are required, by law, to inform the authorities if they believe a client/patient might harm themself or others. Informing the siblings may not be legally required, but sure as heck has the same moral underpinning. And having children when you know there's a 50% chance of suffering and early death is evil - not informing them needs a new word that's harsher than evil.

Agat
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It's the same as not disclosing you're HIV+ before being with someone physically. Completely unacceptable.

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Crescent 3
Community Member
2 weeks ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA. I have Sickle Cell Trait (which is different from Sickle Cell Disease). When I was about to get married, one of the things that I made sure we did, was to have my wife-to-be tested to learn her Sickle Cell status. She had neither the disease nor the trait. That was important, because if she had the trait as well, we likely would have chosen not to have children. Sickle Cell trait is a recessive gene. When two people with the trait have a child, there is a 25% chance that the child will develop Sickle Cell Disease and a 50% chance that the child will have Sickle Cell Trait. I've watched people struggle with Sickle Cell Disease and I've watched as friends buried their 21 year-old daughter who died from the disease. As it is, we have two children. We had them tested at birth. One has the trait, one does not. You and your siblings deserve to know. That isn't your parents' secret to keep.

David
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

There is a reason why in the Jewish Community many people do genetic testing before marriage, bc of genetic diseases to make sure the couple are not both carriers

Joelle Jansen
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I can somewhat understand the idea of not telling them while they're children, because yes, the not knowing is awful. But they should've at the *very least* told them before they had children! There's even some places that allow you to have IVF with embryos that definitely do not have Huntingtons, without telling you whether you tested positive or not, if you don't want to know.

Fellfromthemoon
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

1. Jonathan Swift had never married because his father had a mental disease, and he believed he might have inherited it. Swift didn't procreate to not pass on the suffering. 2. Adoption still exists. 3. We all carry different genetic conditions that may or may not lead to severe consequences before we reach old age. The list includes type 2 diabetes mellitus, many forms of cancer, high blood pressure,even schizophrenia, etc. Usually, the inheritance rate is around 40%. There isn't any blanket decision. As available treatments are continuously developed, the rational decision 30-40 years ago was different than now. 4. Look for early symptomes, get tested and hope for the best. And if you believe your condition won't be manageable in a few decades, consider adoption or embryonal genetic testing.

Evagating Beewolf (she/they)
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

To the AH "parents": if Jonathan Swift, before genetic testing, voluntarily decided not to have kids, the least you can do is inform yours.

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Angela C
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

A friend of my sister's has Huntington's, her bio mom and brother both died young from it (in her family it hit them a lot earlier than normal). She's in her mid 20s and she's probably not going to make it to 30. But guess what? She had a kid. He's like 3 or 4 at this point, she was fully aware of her condition before she had him, and not only is he going to end up losing his mother at a young age, he might have a similarly short lifespan himself. And I fully judge her for knowingly bringing a child into that situation. OP's parents are that same level of selfish. And OP should get her son tested as soon as possible. The results might not be what she wants but in this case it's better to know. Plus she's now in a position to inform her son of his risks (if any) of passing it along, once he's old enough to understand.

Evagating Beewolf (she/they)
Community Member
2 weeks ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

it's possible they had a kid via the ivf others mentioned where you can be sure your kid doesn't have it. edit: obviously still bad to lose your mom so early, but it's not necessarily that the kid has a risk.

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Heather Barrera
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My parents told me. I have always known that my dad's mom had Huntingtons. I grew up knowing my dad might have Huntingtons. My grandfather told my mom after she was pregnant. My father did not know about it until my mom told him. I watched my dad's siblings and cousins get HD. Nobody told them. I was the only one who knew about it. I could tell that all of my cousins were showing signs. I am the oldest of the cousins. In my family, the men show symptoms at earlier ages than the women. My repeats are both on the threshold. I am 60 now and am pretty sure I am starting to show signs. I was told by mom at 4 years old.

arthbach
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

A family member (not my blood relation) was diagnosed with Huntington's around 55 years old before the genetic test was available. The GP (family doctor) had been made a house call, and saw Peter, and hadn't been quite sure what was wrong. His son (John) came into the house whilst the doctor was there, and the doctor saw similar sets of symptoms between the two of them. That's when he put "2 and 2 together". Peter and John died months apart. It was utterly horrendous when the genetic testing became available and people had to decide whether to take the test or not. Within that side of the family, it was decided anyone who was thinking about starting a family MUST be tested, as none of them wanted to pass this down to future generations. It had already caused to much grief.

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LB
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I used to be mad at my folks for not testing for our genetic muscle disorder earlier. I am 34, and I have a pacemaker. Thanks a bunch... My grandma died of the same thing before I was born, but I'm not 100% sure they *could* have tested back then already. I'm not mad anymore. At least I know now, and I am mostly grateful medical science has progressed to the point that my dad is still alive when he should be dead, and I will likely live until retirement and then some - although I wonder if I'll make it to 80, or even 75. I'm not going to have bio kids anyway (gaaaaay) and luckily the sister with the strongest child-wish is negative. But my brother (positive) has potentially passed it on to his kids, who are also at risk of inheriting another muscle disorder from their mom... it's a hot mess.

FreeTheUnicorn
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Testing was readily available for Huntington's 30 years ago, and if her parents had disclosed family history, the check would be automatic, so they not only knew it was possible, but knew for sure that she had the gene. They knew the odds of passing it on, and didn't look to adopt or have IVF because they didn't really care. And now they still don't really care, they just don't want hassle. The evilness of some people is astounding. Especially the father, he witnessed what the disease does and still thought, I don't mind if this happens to my kids.

Alexandra
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is beyond selfish. If you know you have a hereditary illness that's incurable and even if you don't have some genetic disease some people choose not to have children. Please shut up about having to be thankful for life and being in good health now. No one asks to be born so there's no need for gratitude and even if you make it to your fifties in good health, is it worth the agonsing decline? Having you, your children and spouse going through that? Children knowing that this could also happen to them? Yes, there is pre-natal screening for Huntington, but can you imagine the mental burden of that? And then having to decide what to do when Huntington is detected? CRISPR is a good thing, but there is as yet no approval to use it to remedy Huntington's. There so-called parents more or less condemned their children and their children to living under Damocles' sword. Beyond selfish.

Ell Bee
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

From this poor young woman's reaction, I thought immediately that her family had Huntington's Disease. We have that in my family. My grandpa, father, and sister all died from it. We took my sister in to care for her. It is an awful, awful disease. None of my family was diagnosed or knew what it was until 2018 though. (We thought that my father had frontal lobe dementia and Parkinson's.) Many now are facing the possibilties of having inherited it and passed it on. I was one of the lucky ones who did not inherit it. We are still waiting to hear if my brother has it. The blood test for diagnosing Huntington's has only been around since 1993.

René Sauer
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

s****y move from the parents, but does OP have grounds to sue them, like one commenter suggested? What would the charges be?

Jasmijn
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I have a hereditary disease called vEDS (which my mum had no idea was even in her genetics as it’s rare, so I don’t blame her), which is not as cruel as Huntington’s, but I’ve decided not to have biological children because of the 50% chance of passing it on. Huntington’s is such a cruel, brutal disease and I think it’s entirely selfish to knowingly take that risk of cursing your child with it. There are other options to have children, you do need to pass on your genes. But then electing not to tell your bio children that they’re at risk of such a disease? Unforgivable. They’ve spread it to their daughter and now there’s a possibility their grandchild will have it too. Congratulations, well done to them, they’ve doomed their family to suffer from a wretched, debilitating disease.

Cee Cee
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I worked with someone at risk of Huntingdon's. He didn't want to get tested, fair enough. However he got married and they were trying for a baby still without testing. I couldn't believe it or that his wife seemed to be OK about it. Me? I'd test so if necessary I could make plans.

Deborah B
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I completely understand protecting your child - when they're a child. But once they're old enough to make life decisions, they need to know. You have the right to choose to be tested or not, to marry or not, to get genetic counselling and check whether your partner is a carrier before you conceive a child. To have IVF and screen for it, rather than taking the risk. To not have to face your own child knowing that you have a hereditary disease that will steal your future, and that they may have inherited. They owed you the information, so that you could make your own informed decisions about your health and your life. I'm so sorry. This is completely unfair of them, and you have the right to be angry.

Yayheterogeneity
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

God, what a horrible awakening. I seriously hope she didn't pass it to her son. How terribly selfish of her parents. How could they lie??! And lie time and time again. Unforgivable.

Sojourner
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

As someone who has coped with severe depression and have seriously at one point CONSIDERED TAKING MY OWN LIFE? NTA all the way. Why couldn't I have died when I was a baby?

Lee Banks
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

They at least should have told OP when they realized their daughter was in a serious relationship that might lead to children. Truly selfish.

SnackbarKaat
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My friend doesnt have it herself, but can give the gene of an illness to her kids. A non curable disease. She decided to have children and not get them tested. I don't know why she did it this way.. the nurses didnt understand either. I don't know what to think about it

Panda Kicki
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thats what donated egg, sperm or embryos are for. I carry a gene that I dont want to pass on and donation is great to bypass it.

CBolt
Community Member
6 days ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA The parents have been horribly selfish & cruel. When was going to be "the right time" to tell their children? When one started having symptoms? Everyone has a right to their medical information so they can make decisions & plans. As an aside, my co-worker's wife died from Huntington's in her 30s. Most of her siblings got tested but 1 absolutely refused to - said she'd rather not know, which is of course her right. Opinions on that decision, anybody?

Red Skye
Community Member
1 week ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

WHile I think they should have told ALL their children, as soon as they were old enough to breed, and explain very thoroughly what it means, and give them the choice to either NOT breed, or go through IVF, I think you and others should say if you wanted kids, then you should have adopted, but NOOOO, these people absolutely MUST produce 3 kids who have their KNOWN to be defective genes, and in at least one case, already passed them on.

Susical
Community Member
1 week ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I don't get the YTA people at all. I'm just so glad OP may have stopped her brother from having a child - or at least given him the chance to make that decision with his eyes open.

Beth Wheeler
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These parents are idiots, they lied about what the aunt died of, never told their kids this is in the family. Stood by while the daughter had a baby, the son and his g/f want to have kids and have the audacity to get mad at her when she tells her parents she has it and oh yeah it's in the family. Their kids are rightfully royally pissed off at them and the parents are mad that this lady told them. These idiots never planned on telling their kids about this. They condemned them and the grandkids to the high chance of a horrible disease and slow death. I would really love to just slap the hell out of them for this. I can't even imagine doing this to my kids. I would have either used egg or sperm donor, adopted or not had any.

Joe Bloe
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Is life worth living knowing you could have a deadly disease?? I guess a lot of people would say no, the majority here in fact. I think I would say yes. Maybe you would not get it, maybe a cure will be found in the next decades after you have children. The moral question is tell them or not? By the way she reacted, I guess a lot of people could take it really badly.

Jaya
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Having a kid when you know the kid is quite likely to suffer, is selfish. But whether you tell the kid or not, is a difficult situation. The truth is, there is no right way to handle it. Many people who have not been told by their parents, say they wish they'd been told, because they could have made informed decisions and not be blindsided. And many people who have been told by their parents, say they wish they hadn't been told, because they live their whole life in fear and wished they could have just lived a normal life so far. Both choices suck, there is no good choice.

OpheliaPoe
Community Member
2 weeks ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

NTA. Everyone has a right to know their medical history and how it will affect their wellbeing, lifespan, and the possibility of passing a fatal disease to potential offspring. If this information is known to anyone the person with the condition has a right to be informed. This reminds me of those tests they used to do on POC, the poor, those in orphanages, people in 3rd world countries, those that had been institutionalized, etc... Those people had no clue they had a disease and lived their lives as though they didn't. They deserved to know, to be able to make choices accordingly, to plan for a difficult and shortened lifespan. OP's parents treated having children as an experiment: "Let's see if they get it or not. We hope they won't but we're not going to tell them they're at risk, get them tested, or treat the suspected disease." Maybe they foolishly hoped a cure would be found by now but that doesn't explain or excuse the withholding of literally vital information!

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