Talk:Harlequin type ichthyosis

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Can they see? Their eyes are all puffy and bloodshot. What is it like to live Harlequin, and does the skin ever clear up or is it always cut up like that? I would like some more information on this rare condition. 4.240.54.145 22:09, 4 January 2006 (UTC)

Those with families with a history of severe skin disorders are extremely likely to birth a harlequin child.

This obviously can't be right, as it's a very rare condition, but is it meant to say "are relatively likely" or "are extremely unlikely"? If it's the latter, it hardly seems worth mentioning, since everybody is extremely unlikely to bear a harlequin child. The report linked from the article says "There is no report for the relation of harlequin ichthyosis and psoriasis. However both of them are inherited keratinization disorders. We would like to point out that there could be a relation between harlequin fetus and psoriasis", which seems pretty agnostic on the issue (of course, there are skin disorders other than psoriasis). --Camembert

I think it's meant to say, "are more likely", so maybe rephrase as, "Compared to those with no family history of severe skin disorders, families with a history of skin disorders are more likely to birth a harlequin child." - or something like it but less clunky. PMC 23:25, 4 Apr 2004 (UTC)

Well "extremely likely" has now been edited to "the most likely", but I'm still a little uncomfortable with it, as I'm not sure there's hard evidence this is true (at least, as I say, the sources given don't seem to say this ). I think I'll change "are" to "may be", which sort of fits in with the bit I quoted above (though the above is specifically about psoriasis... still, better than it was). --Camembert

Yes, I agree. I hadn't seen this discussion, and was trying to tone down an obviously wrong assertion. The emedicine article says that siblings are sometimes affected, so it's conjectured that it's a recessive genetic condition. I think this is not the same as what is stated at the moment. Lupin 14:00, 25 Apr 2004 (UTC)

Contents 1 Into Adolescence? 2 Harlequin fetus warning 3 Vandalism 4 There it was, gone 5 Graphic baby image

[edit] Into Adolescence?

However, there have been improvements in care, and some children have survived into adolescance.

Is this for real? I for one have a hard time believing it. Thunderbunny 23:18, 28 Aug 2004 (UTC)

This appears to be false. The linked medical report says that as of 1999, the record survival time for a Harlequin baby was 2.5 years. I'm going to edit this, if anyone finds a source for a Harlequin baby living to adolescence, feel free to edit again with source. Alereon 07:00, Sep 13, 2004 (UTC)

There is a 12 year-old harlequin in my school. The medical report is probably incorrect, as [1] mentions a report in which a harlequin baby survived to 9 years (further Googling found that that report was published in 1989. [2]) I've edited the page back. Plop 11:16, 27 Sep 2004 (UTC)

I know of one miraculous case in which a harlequin baby has lived to be 19 years old. Since that child was saved, perhaps they now have a standard method to save harlequin babies and more have been saved. conman16x 13:04, May 17, 2005 (UTC)

Is saving such a deformed child ethically wrong? It's one thing to save a life, but another to put that life through continuous torture with emotional stress. Are there different degrees of the symptom? --Ryz05 01:59, 1 Jun 2005 (UTC)

Probably, but I've seen an article about a harlequin child over 18 years old. He was cool enough with it. -- Kizor 15:49, 1 Jun 2005 (UTC)

I've been asked to provide a link - http://www.10news.com/health/3919722/detail.html -- Kizor 17:28, 8 Jun 2005 (UTC)

Just to say I saw a programme about this on British television, and it is possible for Harlequins to survive this long though it involved an arduous process of applying creams/serums and bathing almost constantly in the cases shown. Xzamuel 7/7/06

[edit] Harlequin fetus warning

moved from User talk:Ævar Arnfjörð Bjarmason#Harlequin fetus warning —Ævar Arnfjörð Bjarmason 15:41, 2005 Apr 7 (UTC)

I've recently noticed that you believe that a warning is not necessary for external links featured in the article about the harlequin fetus disease. I know that the article is about a medical subject, but the disease is widely considered to be disturbing, and I feel that some people who would be afraid of pictures of such diseases may unknowingly click links. Though there is some mention that pictures of it have been featured as shock images, I feel that it is important to notify viewers at least somewhat that not everybody would be happy to view such content. Wikipedia specifies that such images are too disturbing to some people to feature on the main page, and I feel that there should be more indication. I would be happy to work out a compromise of some sort. Thank you for your time. Oklonia 01:52, 7 Apr 2005 (UTC)

For the record this is the edit in question.

I simply think that an encyclopedia does not need this sort of thing, I'm fully with you tha we should disclose the contents of the webpage(s) we link to as we should do with all external links, however we can mangage that without using all-caps and bold WARNING messages which are just distracting, one should not use all caps for one and bolding is reserved for the subject name in the first paragraph. We also have a content disclaimer linked to at the bottom of every page which covers this kind of thing. —Ævar Arnfjörð Bjarmason 15:41, 2005 Apr 7 (UTC)

True, but I do not believe that everybody who uses Wikipedia is aware that such a disclaimer exists, and I do not think that it is clear that "Disclaimers" means that there is a content disclaimer. We might not need to put everything in bold like what was done before (not by me but someone else), but I feel that we should say something that at least tells people about this. There are warnings such as those on other pages on the site, and though such might not be required here, something beyond what already exists should, at least in my opinion, be said. Oklonia 00:23, 8 Apr 2005 (UTC)

There are alot of things on Wikipedia that could offend someone, it's not ours to judge what's offensive but merely to link to information and describe information. —Ævar Arnfjörð Bjarmason 23:44, 2005 Apr 8 (UTC)

I agree with Ævar. I think as long as we make it clear that there are photographs at the other end of the link we don't need to say any more than that. Readers can make their own judgements as to whether seeing a photo would upset them or not. If they've read any of the article they will have some idea of what to expect. — Trilobite (Talk) 03:48, 9 Apr 2005 (UTC)

I found a copyrighted article from the Dictionary of Disease and medical terms with the EXACT same text as this article. I don't know who copied who, it might have been them copying us. Either way, someone has to figure out whats up.

• It's very likely that they copied us. There are tons of sites that do that. Besides, I personally wrote the bulk of this article, and I know for a fact that I didn't copy and paste from someplace else. So, unless it's been totally replaced since then (and I don't think it has...) they're stealing off us. Which Dictionary of Disease did you mean? The only one that I could find that looked legit was the DMAA, (www.dmaa.com) and I don't think that was it. Could you provide a link? [[User:Premeditated Chaos|User:Premeditated Chaos/Sig]] 02:39, 6 Jun 2005 (UTC)
  • Well, people are allowed to copy us, aren't they? It's the point of the whole open encyclopedia deal. Would be nice if whoever did it attributed it, though. Uttaddmb 05:19, 14 August 2005 (UTC)

I think it might be a good idea to include a warning. I see no obvious problem with that from an encyclopedic point of view. I'm not particularly squeamish, but recently I happened to come upon some pictures of Harlequin babies by accident and they literally made my stomach turn. I believe that this would be a rather common reaction, so I think it's fair enough to include that kind of notification. Jonas Liljeström 15:19, 27 February 2006 (UTC)

[edit] Vandalism

I'd just like to point out that some witty and adorable funster has put the words Many people enjoy making love to harlequin children at the end of this article, under references.

Am I going to delete it? Nah. There are so many uptight editors around here that I'm sure one of them will notice and get round to it before long ... (cough, cough) Garrick92 14:47, 17 August 2005 (UTC)

[edit] There it was, gone

I knew someone would do it once they had it drawn to their attention. If more people were fact- and sense-checking, and fewer people were acting as though the sanity of the world depended on their personal intervention in the creation of an article, the quality of this site would pick up dramatically. Straining at gnats and swallowing camels, etc. Garrick92 17:24, 18 August 2005 (UTC)

I find your attitude quite peculiar, I must say. Since you posted here it appears you considered it worth correcting, and yet you show great disdain for anyone who actually takes the initiative to do so. I would suggest that the person who did the job of removing the vandalism was actually behaving in a much more mature way than you. In the future, why not just delete the vandalism instead of using it as an opportunity to lambast those who do much needed cleanup work? Hammerite 18:11, 21 October 2005 (UTC)

Under the genetics section, the children are described as having "armored plating." This certainly has to be vandalism, no? Would anyone object to me changing it to "plated skin?" Mikeythetiger 22:21, 14 January 2006 (UTC)

No, go ahead. Personally I think the description "armored plating" may be nothing but a clumsy choice of words rather than vandalism per se, but "plated skin" is certainly more correct and to the point in any case. Jonas Liljeström 15:25, 27 February 2006 (UTC)

[edit] Graphic baby image

I'm concerned that the image of an affected baby is perhaps a little too graphic for some readers. Although the topic is clearly a visceral one it is possible that people may come across this page not knowing even the nature of ichthyosis and thus may find the image objectionable. If I may refer to the page on prank flash as an example, the main image is taken from the same source (the game Fatal Frame 2) as some shocking pictures used in prank flash, but the image itself is not disturbing in any form. Not only does the site display clear warnings about the content of prank flash sites above links but it also avoids using any prank flash images with the potential to offend (which include, incidentally, the harlequin fetus). It's my opinion that the teenager image and external links are adequate without the controversial picture. However I have not attempted to remove it in case I am alone in my opinion. Eujensc 23:30, 5 January 2006 (UTC)

The image was of dubious copyright status, so I removed it from the article pending resolution. If Image:Harlequin5.jpg doesn't get its copyright status resolved in seven days, it can be speedily deleted. Andjam 23:57, 5 January 2006 (UTC)

A condition this rare and serious deserves a picture. Anyone who is researching this disease will more than likely want to see it. All there needs to be is a "graphic warning". --JOK3R 21:46, 9 May 2006 (UTC)

Joker has also edited the article talk page for Ogrish.com , a shock site [3]. I can't find in his/her contributions an interest in rare congenital disorders. Just saying. Andjam 00:50, 10 May 2006 (UTC)

I was adding a comment to a group of people using that talk page as a place to voice personal opinions on subject matter. Thanks for your "just saying" comment. Real helpful to the discussion. --JOK3R 03:58, 10 May 2006 (UTC)

Warning people not to use wikipedia as a soap box is good, but that you were watching the ogrish.com talk page suggests that your interest in harlequin type ichthyosis is not of a medical nature, as you tried to imply in this article's talk page when you said "A condition this rare and serious ...". Andjam 04:23, 10 May 2006 (UTC)

This doesn't invalidate his argument any less. Genjix 13:16, 6 July 2006 (UTC)

If Jok3r was being dishonest about his motivations, I think that does invalidate what he is saying. For the record, Genjix is in favour of linking to a beheading photo of Daniel Pearl. Surprisingly, I didn't find anything in Genjix's history indicating an interest in rare congenital disorders. One might come to the conclusion Genjix is more interested in the shock value than increasing the sum of medical knowledge. Andjam 23:35, 7 July 2006 (UTC)