NationStates Jolt Archive

There is an infamous and rare skin disease called Harlequin-type Ichthyosis. Let me start off by STRONGLY suggesting that you do not do a Google Image Search on this one. Sufferers of this disease -- so-called "Harlequin fetuses" -- are severly deformed, disturbingly so. We're not talking "Wow, that's pretty gross" disturbing; I mean "Holy shit, I'm not sleeping tonight" disturbing. So... yeah. I warned you.

Anyway, there's this rare skin disease out there. It is genetic, and only affects around one in 300,000 births. It works by screwing up the outer skin layer and causing horrible complications: the skin is extremely hard and cracked, external features such as eyes and ears are missing or malformed, and the body dehydrates very quickly.

In the past this condition was invariably fatal, but in recent years intensive care has managed to nurse a handful of victims into childhood and beyond.

Let's examine the case of Lucy and Hannah Betts, age 18 and 15, respectively. They were born with the condition, but managed to survive infancy and childhood. Their continued survival is dependent on an arduous daily routine: getting up before dawn and taking two-hour baths to soften the skin, scouring their bodies with pads to scrape off the excess, then smearing themselves with protective cream three times a day. Even then, the girls are covered with a thick layer of disfigured skin and are constantly battling infection. They are nearly blind, and one has cerebral palsy.

You might say that this story is inspiring -- touching, even. The idea that this family could be brave enough to soldier on through pain and danger to live, savoring each day... it puts things in perspective. But then, like rain cloud, human stupidity swoops in and evaporates all hope.

Consider: Mr. and Mrs. Betts each have the harlequin gene, obviously, and must have known this after Hannah's birth. Despite this genetic misfortune, and the fact that each pregnancy had a one-in-four chance of passing on the gene, the parents decided to have another child. And presto! They now have two harlequin children on their hands.

No, wait. It gets better.

By surviving the disease into adulthood, Lucy and Hannah are now more likely than their parents to pass on their affliction. Despite this, and despite the experience of struggling for years to raise two children in constant pain and danger, the parents have expressed a strong desire to have their children marry and have children.

Boundless optimism? Misguided perseverence? Sheer, unadulterated stupidity?

Right. I don't even know how to respond to that.

I'm going to have to say they can do what they please but still alarm bells are ringing (and all parents want grandkids so they can‘t be blamed)

And the only Google image (http://content.answers.com/main/content/wp/en/thumb/c/c0/180px-Harlequin2.jpg) (erm okay…)

edit: and I wouldn't do neither myself mostly because I don’t think I could handle even one child with this disease which makes me feel kind of bad :(

I'm happy for them being able to get along.

If I were in that position, I doubt I would have another child biologically: I would probably adopt.

If I had the disease, I would be very torn, but I think I would adopt again.

Wow, that's really, really disturbing, tragic, but disturbing.

i did a google search and there was only one picture so i looked in some of the site results and found this one http://ichthyosis.signsandtees.com/harlequin-type-ichthyosis.html


which is really just more links, but the links were to things that had nothing to do with this, but i felt i would share this one with you.


Look for Harlequin-type Ichthyosis on eBay


i now return you back to what the thread was originally intended to be for

(if by chance you do want to see what it looks like, search for "Harlequin-type Ichthyosis" and click on the lonely canadian result. i will warn you that if you do the results are scary/disturbing

I've long used this exact example in favour of compulsory sterilisation of severely genetically impaired individuals; particularly those with diseases that cause significant hinderence in every day life or pain and suffering. I don't care if you want kids, by having them, you're endangering a child. Which is unacceptable.

By surviving the disease into adulthood, Lucy and Hannah are now more likely than their parents to pass on their affliction.
Considering the fact that they are nearly blind and suffering from a disfiguring skin condition, I doubt that they really have all that much chance of passing on anything. Natural selection in humans may be badly battered and deformed, but she ain't dead.

And, yes, I know that was a disgustingly calloused thing to say, but it wasn't nearly as disgustingly calloused as a Harlequin Fetus.
*rimshot*

i did a google search and there was only one picture
A daredevil, eh? Well, I assume you searched for "Harlequin-type Ichthyosis", which is the obscure medical name for the disease. The picture you found was of one of the luckier (if you can call it that) carriers of the disease who survived to adulthood. Amazingly, he's a triathlete and a fairly good swimmer.

Anyway, if you feel you must see these images, you need to search for "harlequin fetus", which is the name most commonly used by pranksters that shock people with the images. But again -- these images are very, very, very disturbing. Proceed at your own risk.

And, yes, I know that was a disgustingly calloused thing to say, but it wasn't nearly as disgustingly calloused as a Harlequin Fetus.
Correct me if I'm wrong, but... did you actually, in fact, go there? I thought you did, but I just want to make sure. You know, from the source.

Considering the fact that they are nearly blind and suffering from a disfiguring skin condition, I doubt that they really have all that much chance of passing on anything. Natural selection in humans may be badly battered and deformed, but she ain't dead.

And, yes, I know that was a disgustingly calloused thing to say, but it wasn't nearly as disgustingly calloused as a Harlequin Fetus.
*rimshot*

Oh snap.

Anyway, if you feel you must see these images, you need to search for "harlequin fetus"

ahhhh my eyes! (why has this thread become a freak show?)

ahhhh my eyes! (why has this thread become a freak show?)
I warned you. Several times, actually.

Sometimes medical science needs to sit back and shut the fuck up.

And the Bettses are a good case for mandatory sterilization or tests to become parents.

Natural selection in humans may be badly battered and deformed, but she ain't dead.
She is chained in humanity's basement getting regular beatings.

Ever been to Rotten.com?
Don't go to Rotten.com.

Anyway, yah, it seems kinda stupid to have another kid, however it could have been an accident. As for passing on the gene...no, these kids are not ever ever getting laid.

And wanting grandkids...yikes.

ahhhh my eyes! (why has this thread become a freak show?)

How bad is it, worse then a decapitation video?

Anyway, yah, it seems kinda stupid to have another kid, however it could have been an accident.

No, it couldn't if they want their kids to have children. They both need to be sterilized for the sake of their children and humanity. And if their children refuse to be sterilized, they should be forced.

And the Bettses are a good case for mandatory sterilization or tests to become parents.

Must we speek of right-limiting actions?:mad:

Correct me if I'm wrong, but... did you actually, in fact, go there? I thought you did, but I just want to make sure. You know, from the source.
I did, indeed, got the plane tickets to prove it, if you want 'em.

Sometimes medical science needs to sit back and shut the fuck up.
But I think I've just been upstaged on all accounts anyway, so, yeah . . .
*returns to drawing board*

Must we speek of right-limiting actions?:mad:

Yes.

Must we speek of right-limiting actions?:mad:

It's not a right to condemn your offspring with a crippling disease.

How bad is it, worse then a decapitation video?
It is the stuff of horrible, disturbing nightmares. It is one of the creepiest images I've ever had the misfortune to see.

In short, it is quite bad.

It's not a right to condemn your offspring with a crippling disease.

It's your right to kill them via abortion (Which I'd never want to take away mind you.) so it's your right to gamble with their well being.

It's your right to kill them via abortion (Which I'd never want to take away mind you.) so it's your right to gamble with their well being.

No, it's not. You have no ownership over the life of your child once it is outside your body, and by condemning your offspring to this disease you are condemning them to pain and suffering for their entire life, simply because you wanted a child. Abortion is a totally different concept - the fetus is a parasite, which is why the mother has total authority to condemn it. But once it's no longer a parasite, the mother has no intrinsic authority over the child.

I've long used this exact example in favour of compulsory sterilisation of severely genetically impaired individuals; particularly those with diseases that cause significant hinderence in every day life or pain and suffering.
I've got one of those genetic diseases.

No, it's not severe, but yes, I deal with daily pain and suffering on a relatively mild level. Had I chosen to have kids in my teens or twenties before it manifested in a major way, no one would have looked twice. It's in my genetic heritage, though, and I'm sure I'd have passed it on. At this point I neither have nor want kids, so for me it's moot.

So here's the question. Who decides what is "severe"? You? An internet forum? One doctor, or one nurse, or one judge? Or do we impanel a jury of medical, legal, and governmental 'experts' to decide who lives and who dies? In other words, Who gets to be God and take away my life?

Is it you? You and what fucking army?Yeah, it's easy to sit back and say "compulsory sterilisation". Try again when it's your brother, your sister, your husband, or your wife. The view ain't quite as clear from the ground as it is in your ivory towers, chum.

I've got one of those genetic diseases.

No, it's not severe, but yes, I deal with daily pain and suffering on a relatively mild level. Had I chosen to have kids in my teens or twenties before it manifested in a major way, no one would have looked twice. It's in my genetic heritage, though, and I'm sure I'd have passed it on. At this point I neither have nor want kids, so for me it's moot.

So here's the question. Who decides what is "severe"? You? An internet forum? One doctor, or one nurse, or one judge? Or do we impanel a jury of medical, legal, and governmental 'experts' to decide who lives and who dies? In other words, Who gets to be God and take away my life?

Is it you? You and what fucking army?Yeah, it's easy to sit back and say "compulsory sterilisation". Try again when it's your brother, your sister, your husband, or your wife. The view ain't quite as clear from the ground as it is in your ivory towers, chum.

Does your disease significantly hinder your life, in a way that means you cannot have a fulfilling, "normal" existence? If not (I presume not) then it is not morally right to prevent you producing offspring. However, for sufferers of diseases which cause significant, life-hindering disease (harlequin, down syndrome, cystic fibrosis etc), I consider it morally wrong to allow them to pass this disease onto another person.

I apply this reasoning to anyone, as I do all my opinions. I am not a hypocrit.

All people have the right to produce offspring, however, no person should cause harm to another. By concieving a child knowing it will be severely disabled, you are harming a person, and should therefore lose the right to reproduce.

No, it's not. You have no ownership over the life of your child once it is outside your body, and by condemning your offspring to this disease you are condemning them to pain and suffering for their entire life, simply because you wanted a child. Abortion is a totally different concept - the fetus is a parasite, which is why the mother has total authority to condemn it. But once it's no longer a parasite, the mother has no intrinsic authority over the child.

It's still a human life, and is just as parasitic once it leaves.

Does your disease significantly hinder your life, in a way that means you cannot have a fulfilling, "normal" existence? If not (I presume not) then it is not morally right to prevent you producing offspring. However, for sufferers of diseases which cause significant, life-hindering disease (harlequin, down syndrome, cystic fibrosis etc), I consider it morally wrong to allow them to pass this disease onto another person.

I apply this reasoning to anyone, as I do all my opinions. I am not a hypocrit.

who decides what "Significantly" means? I have dark brown hair. I'm sure some people think that "Significantly" effects my life (or the value thereof). :mad:

who decides what "Significantly" means? I have dark brown hair. I'm sure some people think that "Significantly" effects my life (or the value thereof). :mad:

Does brown hair cause you constant, agonising pain, cripple you, mentally retard you or reduce your lifespan? No. This is a terrible argument against eugenics.

Does brown hair cause you constant, agonising pain, cripple you, mentally retard you or reduce your lifespan? No. This is a terrible argument against eugenics.

I'm saying it sets a precident, a precident that can lead to effed up things.

I'm saying it sets a precident, a precident that can lead to effed up things.

Rubbish. The slippery slope argument, in this context, is a logical fallacy. You cannot connect eugenics to prevent crippling genetic disease with eugenics to eliminate a certain type of hair colour. You are arguing that if A occurs, the chances of B occuring will increase, when you have no evidence that this link is causal.

Rubbish. The slippery slope argument, in this context, is a logical fallacy. You cannot connect eugenics to prevent crippling genetic disease with eugenics to eliminate a certain type of hair colour. You are arguing that if A occurs, the chances of B occuring will increase, when you have no evidence that this link is causal.

Fine then. I believe that people have an absolute right to consensual sexual relations. And if it comes to it, I'm going to vote for it that way, and if it comes to that, join the first resistance movement I can find. Clear enough for ya?

Fine then. I believe that people have an absolute right to consensual sexual relations. And if it comes to it, I'm going to vote for it that way, and if it comes to that, join the first resistance movement I can find. Clear enough for ya?

Sure, people have the right to engage in sex, but I don't believe people have the automatic right to condemn offspring with a crippling genetic disease. Have sex; just make sure you can't have a child.

Does your disease significantly hinder your life, in a way that means you cannot have a fulfilling, "normal" existence? If not (I presume not) then it is not morally right to prevent you producing offspring. .
The answer to your first question is "yes", for reasons I won't go into. It might not be "yes" for you in identical circumstances, as it has to do as much with my personal worldview and other factors that might not apply to you.

Would a child of mine answer "yes" under the same circumstances? I don't know, and neither do you. You can't. You're sitting under your moral umbrella of righteousness, preaching about something you have no experience with.

I have relatives with Parkinson's disease. It's manifested through at least three generations. In the end stages, it's a very difficult disease to deal with, and yes, it significantly impairs their lives. Now you tell me, Mr. Moral High Ground. Does a near-certainty of end-life pain require that my relatives not be allowed the 60 years of pleasant and normal life they had before the disease came on?

Who decides? It better not be you, 'cause you'd take out most of my family. Unless it only counts if it affects a child while they're still a child, I reckon.

Holy double standard, Batman.

Sure, people have the right to engage in sex, but I don't believe people have the automatic right to condemn offspring with a crippling genetic disease. Have sex; just make sure you can't have a child.

I consider the act of having a child to be a natural part of hetero sex. And thus is included in my statement.

The answer to your first question is "yes", for reasons I won't go into. It might not be "yes" for you in identical circumstances, as it has to do as much with my personal worldview and other factors that might not apply to you.

Would a child of mine answer "yes" under the same circumstances? I don't know, and neither do you. You can't. You're sitting under your moral umbrella of righteousness, preaching about something you have no experience with.

I have relatives with Parkinson's disease. It's manifested through at least three generations. In the end stages, it's a very difficult disease to deal with, and yes, it significantly impairs their lives. Now you tell me, Mr. Moral High Ground. Does a near-certainty of end-life pain require that my relatives not be allowed the 60 years of pleasant and normal life they had before the disease came on?

Who decides? It better not be you, 'cause you'd take out most of my family. Unless it only counts if it affects a child while they're still a child, I reckon.

Holy double standard, Batman.

You're attempting to goad me into stating that I'd advocate sterilisation of your family. Ideally, yes, I would. Realistically I accept that people will not allow that. However, yes, I'm saying that your relatives with Parkinsons, under ideal circumstances, should never have been born. If you believe your condition causes you undue pain and suffering and hinders your life (which I don't agree with), then yes, under ideal circumstances, you should not have been born either. Not that it'd matter to you - you wouldn't exist.

If you believe your condition causes you undue pain and suffering and hinders your life (which I don't agree with)
You're not in a position to evaluate my life, and I intend to keep it that way. Also, I'm the first generation to manifest this disease in this severity. Your rules wouldn't have applied to me.

I don't need to invoke Godwin's Law to tell you that attempts at eugenics do not work well in the real world. Would the human race be healthier and and in less pain if we culled people like cattle? Probably. But people aren't cattle, are they?

You want to make a moral stand for eugenics? That's your right. But hear this - you better be ready for lots of resistance from the majority of humanity that have the genetic potential for serious diseases. You look after your own gene pool. My morals can handle mine just fine.

Humans are no more important than cattle. I do take this rather literally, because I do advocate the farming of humans sans neo cortex for food. :)

I consider the act of having a child to be a natural part of hetero sex. And thus is included in my statement.

Then your point in this discussion is moot as you are using your own twisted moral values to interject a logical fallacy into a debate where children do not have to be the consequence of sexual relations.