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Harlequin type ichthyosis
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28 / M / the 650
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Posted 5/31/08

bubblekichi wrote:

it's a genetic disorder...have to carefully choose your spouse


"do you have a chance of giving birth to harlequin type ichthyosis?" ouch..i'd slap anybody if they asked me that and vice versa haha.
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Posted 5/31/08

music190 wrote:
Yeah it makes you wonder what the mother did while carrying her child.

Indeed it does. I wonder if its linked to some thing in the mother's genes, like if its hereditary, or if it stems from some thing irresponsible that the mother does while pregnant. Kind of doubtful that it is the mother's direct fault... I mean, women have done cocaine and all kinds of drugs while pregnant and still had a perfectly healthy child. Who knows.
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Posted 5/31/08
OMG. I just watched the video. After the initial shock, there was only severe sadness for the child.And anger for the cameraman. Oh wow. That was so sad. That is just creepy. I feel so sorry for those babies. But this raises a very important question. Should euthanasia be legalized? I know that in the States, it's still illegal. But wouldn't it be better to end the suffering rather than live on like that?
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Posted 5/31/08
that so sad that poor baby
Posted 5/31/08
omg...i didnt see the video but i did manage to see some pictures of the baby...it made my stomach like sick. It's so sad seeing how imperfect we are and the different types of diseases there are in the world...dear god....its so sad....
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Posted 5/31/08

tenebrousoul wrote:

OMG. I just watched the video. After the initial shock, there was only severe sadness for the child.And anger for the cameraman. Oh wow. That was so sad. That is just creepy. I feel so sorry for those babies. But this raises a very important question. Should euthanasia be legalized? I know that in the States, it's still illegal. But wouldn't it be better to end the suffering rather than live on like that?


I know there is a whole thread on euthanasia, but even where it is legal, concent needs to be given. That defenitaly won't happen with an infant. (By the way, euthanasia is legal in the United States. It is a state law that is passed to ban it, not a federal one, making it legal in 1 state.)

I can't answer the last question, but you might want to ask that to one of the (few) adults who have grown up with the disease. I think they might value their life.
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Posted 5/31/08

chocofluffywhip wrote:
I can't answer the last question, but you might want to ask that to one of the (few) adults who have grown up with the disease. I think they might value their life.


I'm sorry to say that there is no one who has lived past a year and a half with that disorder/disease. With continuous infection and disease, no harlequin person would be able to survive for long outside. Even if a person lived in a protective bubble, the body is incredibly weak and begins to break down and rupture extensively. It's a life of pain and suffering that ends fairly quickly.
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Posted 6/1/08

ngox wrote:


chocofluffywhip wrote:
I can't answer the last question, but you might want to ask that to one of the (few) adults who have grown up with the disease. I think they might value their life.


I'm sorry to say that there is no one who has lived past a year and a half with that disorder/disease. With continuous infection and disease, no harlequin person would be able to survive for long outside. Even if a person lived in a protective bubble, the body is incredibly weak and begins to break down and rupture extensively. It's a life of pain and suffering that ends fairly quickly.


That's not true. While it is rare, there are several documaented cases. One mentions sisters ages 8 and 1 1/2. 2 others talk about fully grown adult males that manage daily activites with uses of lotion and excessive scrubbing for theit excess skin.
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Posted 6/1/08 , edited 6/1/08

chocofluffywhip wrote:


tenebrousoul wrote:

OMG. I just watched the video. After the initial shock, there was only severe sadness for the child.And anger for the cameraman. Oh wow. That was so sad. That is just creepy. I feel so sorry for those babies. But this raises a very important question. Should euthanasia be legalized? I know that in the States, it's still illegal. But wouldn't it be better to end the suffering rather than live on like that?


I know there is a whole thread on euthanasia, but even where it is legal, concent needs to be given. That defenitaly won't happen with an infant. (By the way, euthanasia is legal in the United States. It is a state law that is passed to ban it, not a federal one, making it legal in 1 state.)

I can't answer the last question, but you might want to ask that to one of the (few) adults who have grown up with the disease. I think they might value their life.


Eh, watching the video raises the idea. Would it not be more humane for the child to end it's life, when most likely, it'll die anyways? As for asking the few adults, you have to look at the quality of life. In the US, I read the story of one of them surviving, and going on to be an athlete. The man has to take in 7000 calories. Most americans take in roughly2500 calories, plus at night the man has to be put on a pure protein injector. That man needs to be applauded, but that's not the quality of life I would want for my child. That's not the kind of life I would want for my child.
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Posted 6/1/08

kino_neko wrote:

omg...i didnt see the video but i did manage to see some pictures of the baby...it made my stomach like sick. It's so sad seeing how imperfect we are and the different types of diseases there are in the world...dear god....its so sad....


Well said.. Well said.
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Posted 6/1/08

MidnightZorya wrote:

Watched it..poor baby...=/ I think that baby is suffering 24/7. It would be more humane to...end its life right away.
What I found rather disturbing was not actually the baby, but the person who filmed it and the sister who hold it. O_o The cameraman was pretty disrespectful imo. w/e

People tend to make fun about others misery. Which I can't really follow, because when I see stuff of this kind I am feeling a bit irritated/disturbed by what I just saw, and don't really know how to react to that.

But in this case it would be nice to know how to avoid things from this kind happening..., man, that would suck to get a baby like that. >.> I'd be probably scared for life after giving birth to a baby like that. Always having nightmares...hmm No offence, but it really looks like an alien or something like that, eventhough it is clearly humane. I think it would be a pretty scary sight to see this kids grow up.

Floetry~


yea the fact that they were parading the poor child and the camera man wan trying to get as much of its abnormalities as possible is what disgusted me. felt really sorry for the baby tho...
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Posted 6/1/08

rokujinshou wrote:


music190 wrote:
Yeah it makes you wonder what the mother did while carrying her child.

Indeed it does. I wonder if its linked to some thing in the mother's genes, like if its hereditary, or if it stems from some thing irresponsible that the mother does while pregnant. Kind of doubtful that it is the mother's direct fault... I mean, women have done cocaine and all kinds of drugs while pregnant and still had a perfectly healthy child. Who knows.


yea it is hereditary...it sez on wikipedia...

(soz for the double post)
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Posted 6/1/08

tenebrousoul wrote:


chocofluffywhip wrote:


tenebrousoul wrote:

OMG. I just watched the video. After the initial shock, there was only severe sadness for the child.And anger for the cameraman. Oh wow. That was so sad. That is just creepy. I feel so sorry for those babies. But this raises a very important question. Should euthanasia be legalized? I know that in the States, it's still illegal. But wouldn't it be better to end the suffering rather than live on like that?


I know there is a whole thread on euthanasia, but even where it is legal, concent needs to be given. That defenitaly won't happen with an infant. (By the way, euthanasia is legal in the United States. It is a state law that is passed to ban it, not a federal one, making it legal in 1 state.)

I can't answer the last question, but you might want to ask that to one of the (few) adults who have grown up with the disease. I think they might value their life.


Eh, watching the video raises the idea. Would it not be more humane for the child to end it's life, when most likely, it'll die anyways? As for asking the few adults, you have to look at the quality of life. In the US, I read the story of one of them surviving, and going on to be an athlete. The man has to take in 7000 calories. Most americans take in roughly2500 calories, plus at night the man has to be put on a pure protein injector. That man needs to be applauded, but that's not the quality of life I would want for my child. That's not the kind of life I would want for my child.


That's really not something that should be decided, especially after birth. I'm not about to go on an abortion rant, but plenty of people have milestones to go over but at the same time cherish their life. What about diabetics that need tubes? Or people with Cystic fibrosis?

You also need to look at how hard this would already be for the parent- it was stated that now technology is advanced enough to detect Harlequin type ichthyosis in the womb with things like scrapings or 3-D sonograms. If the parents had wanted to do something, they certainly would have time. Even suggesting this brings up closer and closer to making it acceptable or even a social norm (ie terminating life for any flaw) Have you ever seen the pain a mother has to go through when she recieves numerous calls a day from the hospital trying to coax her into an abortion because her child was diagnosed with downsyndrome? And that is something fairly common.

A few years ago TIME published an article about how that practice is becoming more and more popular. Clearly there are supporters, but there are also extremists who are willing and would like to take it to the next step. Are you perfect? Family prone to any disease? Obese? Any deformity (mild to wrong color of hair, I jest you not)? Now, I am a realist and I'm sure this 'slippery slope' factor would take generations to set in, but I cannot say that I support ending a life based on an imperfection in uetero- let alone after birth. That's no longer eugentics you know, as I stated concent needs to be given. This has moved onto genocide by defentition.
Posted 6/1/08

tenebrousoul wrote:


kino_neko wrote:

omg...i didnt see the video but i did manage to see some pictures of the baby...it made my stomach like sick. It's so sad seeing how imperfect we are and the different types of diseases there are in the world...dear god....its so sad....


Well said.. Well said.


thank you thank you....if its a compliment...i think it is...but really....goodness its so sad
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26 / F / Colorado
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Posted 6/1/08 , edited 6/1/08

chocofluffywhip wrote:

That's really not something that should be decided, especially after birth. I'm not about to go on an abortion rant, but plenty of people have milestones to go over but at the same time cherish their life. What about diabetics that need tubes? Or people with Cystic fibrosis?

You also need to look at how hard this would already be for the parent- it was stated that now technology is advanced enough to detect Harlequin type ichthyosis in the womb with things like scrapings or 3-D sonograms. If the parents had wanted to do something, they certainly would have time. Even suggesting this brings up closer and closer to making it acceptable or even a social norm (ie terminating life for any flaw) Have you ever seen the pain a mother has to go through when she recieves numerous calls a day from the hospital trying to coax her into an abortion because her child was diagnosed with downsyndrome? And that is something fairly common.

A few years ago TIME published an article about how that practice is becoming more and more popular. Clearly there are supporters, but there are also extremists who are willing and would like to take it to the next step. Are you perfect? Family prone to any disease? Obese? Any deformity (mild to wrong color of hair, I jest you not)? Now, I am a realist and I'm sure this 'slippery slope' factor would take generations to set in, but I cannot say that I support ending a life based on an imperfection in uetero- let alone after birth. That's no longer eugentics you know, as I stated concent needs to be given. This has moved onto genocide by defentition.


Very well articulated. Splendid points. (^__^) I agree. I don't think it's reason enough to resort to euthanasia due to an abnormality. Everyone deserves a chance to live out their lives.

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