Talk:Harlequin-type ichthyosis/Archive 1

Archive 1

Eyes

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)

The puffy and bloodshot eyes are actually the eyelids turned inside out, which seems much less disturbing. I also used to think that they were the eyes until I read otherwise. --Holymolytree2

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)

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 [1]. 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)

If you were researching the topic and needed to see an image, there are external links that have such images. I believe there's already a picture for anencephaly (I minimized the page and scrolled down slowly so I could avoid seeing an image; when there appeared to be one, I closed the page) which is just ridiculous. Again, there are external links with warnings for sensitive readers such as myself on that page as well, for those interested. But for the sake of those who want to read about such a topic and still be able to sleep at night, I don't think we should include an image. Tskhali 20:05, 5 February 2007 (UTC)

Yes there is an image for anencephaly (thanks for ruining my day... not really; I've seen worse. But it is not pretty). In any case, a good compromise would be to simply provide an image of affected skin, such as of the leg. The primary effect is the hardened skin, all other symptoms are at least related to that.

BTW I rm the part where it is claimed that the Iraqi child's HTI was not caused by DU. The uncertainty is as well expressed as it needs to be without it (I believe the pic is genuinely from Basra or near Basra, but I don't have the primary source), and the claim that DU did not cause the case is clearly wrong, as a) there is apocryphal evidence of a marked increase in congenital diseases in S Iraq since Desert Storm but less so in neighboring regions affected by pollution from burning oil yet not DU debris, and b) of course a loss-of-function mutation can be caused by radiation following ingestion of DU (which inevitably did happen and still happens down there; the stuff is all over the food chain by now; incidentially, oral uptake is the single rather harmful way to get messed up by DU and it has been proven to lead to increased incidence in birth defects in other mammals; there have been no studies in humans yet I think). What exactly caused this particular case of course cannot be determined as of now; I guess it's safe to say that average lifespan for Harlequin babys in S Iraq is in the order of days if not hours and has been for some time. Dysmorodrepanis 04:14, 7 February 2007 (UTC)

Turns out I was wrong - see here. But of course this does not say anything about cause of one particular case. Dysmorodrepanis 04:19, 7 February 2007 (UTC)

Well, the average lifespan of almost all harlequin babies anywhere is a matter of days or hours; it doesn't matter what caused them to be born that way. I like the idea of having the arm or leg, perhaps even the torso, of an effected individual. I'm all for it as long as its not of the persons face. And no, anencephaly is not a pretty thing, and I'd really really like to get rid of the image, because its a fascinating (albeit disturbing) phenomenon. Tskhali 00:35, 8 February 2007 (UTC)

I think the warning is a little offencive towards sufferers, If a person reads the article they have a good ide of whats comming Catintheoven 10:22, 7 March 2007 (UTC)

Confusing

I have tagged this article with the {{confusing}} template, because I can't understand it, especially the first paragraph. Could someone help make this more clearer? --AAA! ^(AAAA) 02:56, 2 March 2007 (UTC)

Can you suggest something for the opening paragraph to make it less confusing? EuroTeck 22:49, 11 March 2007 (UTC)

LOL

Confusing Template?!

Apart from the word 'disease' (which may suggest something contagious perhaps?) I find nothing confusing about the opening paragraph. It is an accurate description of a medical condition using appropriate and unambiguous terms. Perhaps such usage of medical terminology and assorted other big words in an article describing a medical condition is confusing? Perhaps it should be re-written to accommodate those with an interest in congenital birth defects who yet have no grasp of the correct terms and find that their interest does not extend to looking said terms up. In other words, I suggest leave it, its fine and there are plenty of other sites making it "more clearer." Plutonium27 16:03, 24 May 2007 (UTC)

I agree. Removing the tag. Jumping cheese 11:05, 21 June 2007 (UTC)

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)

I'm sorry. That's actually a little funny. — Preceding unsigned comment added by ChesterG (talk • contribs) 05:39, 13 August 2007 (UTC)

Aspects of the Fetal Skin

I've been wonder, just what exactly is that layer of yellowish material that covers the child apon birth. Is thias skin or what? This is one of the first times I seen pictures that contain this feature, most others seem to have raw red skin. Whatever it is, it dosn't appear to be perminent, since the few survivors of this disease arn't still covered with it. Would anyone like to share some light on this? —Preceding unsigned comment added by 141.157.98.58 (talk) 02:54, 31 October 2007 (UTC)

I first learned about this disorder on a boring night job, reading a medical book.. It is nothing less than devestating, I can't even imagine what these poor kids have to go through in their short lives. It is my hope that eventually medical science will advance to a point that it can be more helpful, both to the children and also their families. Having birthed six children myself I imagine that the parents need all the support they can get. --75.105.91.249 (talk) 05:02, 21 December 2007 (UTC)

Comment removed for civility reasons Andjam (talk) 04:24, 26 December 2007 (UTC)

Photograph

Someone has added a photo request to this article. There are at least two good images in polish article about it; one is public domain illustration from 1886 J. Bland Sutton's classic paper, second is .svg image made by me (in polish, but easy to translate). Third image is from turkish wikipedia and it's copyright status is uncertain (however, it's already in wikimedia commons). Filip en (talk) 11:52, 9 February 2008 (UTC)

Harlequin fetus warning

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

I actually just found a video on YouTube last night. I was looking up Siamese twins and a video came up of what I honestly thought was some sort of puppet. When I found out it was real it completely broke my heart. Also I honestly couldn't sleep and I could not get the image out of my mind. I actually cried for a long time. I may well be more sensitive and I mean no disrespect to parents of these precious babies or the persons that suffer with this disease but sometimes you just wish you could unsee something. I think in this particular case there really should be some kind of WARNING. It would not have saved my heartbreak last night but others coming to wiki to look up things might benefit from such a warning. 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)

I don't think there's anything wrong with putting a warning on here. Just at the bottom, where we link to the video/pictures, just put a small warning after the link saying something like, "A Note of Caution: This condition can be extremely shocking/upsetting and viewers are urged to use their judgement.' Something like the warning on the Alternative Reading section on the page snuff film. Evil bacteria (talk) 22:01, 15 February 2008 (UTC)

Use of the Thorn

The part of the article that reads, "On Thursday, April ye 5, 1750..." should read, "On Thursday, April þe 5, 1750..." The thorn character was used as a 'th,' so this sentence fragment is the equivalent of "On Thursday, April the 5, 1750..." The thorn was often written similarly to a 'y' and in printing a 'y' was used due to the the thorn being unavailable on printing machines. I tried to change it, but it won't let me, probably because 'þe' registers as a spelling mistake. Could someone please fix this? Holymolytree2

 Done. - Zeibura ^Talk 08:15, 14 June 2007 (UTC)

Why the hell has some retard deleted the 'þe' from the quote? Where the hell do these people get off making 'corrections' to a frigging quote? The user who made the change, 76.206.221.150, is obviously an idiot and should be banned from making changes. Being unaware of a particular symbol or character isn't licence to decide that it's an error and then delete it. Holymolytree2 (talk) 11:40, 27 April 2008 (UTC)

Harlequin type ichthyosis vs. Harlequin syndrome

Harlequin syndrome should not redirect to Harlequin type ichthyosis. It is a different disorder.

That is correct.*M ♦ ANDERSON ♦ 198 00:20, 25 March 2009 (UTC)

Oldest living case?

This article states that the oldest living person with the disease was born circa 1984, yet states afterwards that there is an adult man born circa 1980 who still thrives. Can we change to say the man born in 1980 is oldest, or is he dead? Would like some sort of conformation.--Helgado (talk) 22:57, 7 April 2009 (UTC)

Feel free to challenge and remove the fact if it has no citation. kilbad (talk) 23:05, 7 April 2009 (UTC)

Information Removal

Aside from the ridiculous argument that educational information should be removed because it is disturbing, I move that the elementary genetics problems (frequencies) in the Notable Cases section be removed. The information should be truncated after "The chances of suffering from the condition were given as roughly one in a million in general." (which, by the way should probably be cited, as I'm sure the chances are actually much lower). The rest of the information is simple population genetics and is unnecessary.*M ♦ ANDERSON ♦ 198 00:18, 25 March 2009 (UTC)

As per no objections to my claim of unnecessary information I will truncate the section.*M ♦ ANDERSON ♦ 198 16:27, 11 April 2009 (UTC)

Vandalism

This article attracts a lot of vandalism. Unregistered users should not be allowed to edit it. Drutt (talk) 10:00, 14 October 2009 (UTC)

I personally agree but I do not think the admins will consider it due to the length of time between edits. If others agree feel free to request it here. ~ Vince Navarro^(t/c) 13:21, 14 October 2009 (UTC)

Please Don't Include Photos

I have seen some videos on youtube, and it looks absolutely disgusting. The eyes of the child where solid red, and the head had half of like a strip of hair totally not there. I think just for the sake of people, photos not to be included. Possibly there could be a link to one, but there needs to be a warning. It is absolutely disgusting, please think this over well. This gave me nightmares for weeks.

AntiVanMan (talk) 23:17, 15 February 2008 (UTC)

Wikipedia is not censored. And "disgusting" is not the proper word, you should think about parents and families of those babies. Filip en (talk) 11:37, 20 February 2008 (UTC)

AntiVanMan: The anatomical drawing, along with the description in the article, is clear enough. Filip: there are no pictures attached to the Byford Dolphin incident (taken from the AJFMP's very detailed publication) because they would be far too visceral - for some people - to see unprepared, just like photos of this disfiguring condition. Before you consider uploading inline photographs, consider adding them as external links or adding them to the Bad image list.

edit: I failed to notice that the illustration is one you suggested from the Polish article. Disregard the above comments.

charlie liban (talk) 05:43, 24 March 2008 (UTC)

Do you have images of the Diving bell incident? I didn't know such photos existed. --76.11.117.209 (talk) 19:42, 23 December 2009 (UTC)

I you guys want to watch the video,you can go here http://www.youtube.com/watch?v=7xW4TVRLSgg .This is the original video.I got this video from a friend from Mecca —Preceding unsigned comment added by 124.13.112.140 (talk) 16:10, 19 March 2008 (UTC)

Not sure if the video above is the same, but here's a video of it with a really horrible title: http://www.youtube.com/watch?v=ncecwD3xRWc Everytime I watch that video, I can't help but feel bad for the little guy :( 70.44.150.168 (talk) 00:18, 4 August 2008 (UTC)

You care more fot these who see the diseased than the diseased themselves? That's rich. --91.63.77.171 (talk) 21:48, 22 January 2009 (UTC)

How, exactly, is this disturbing? (Personal attack removed) —Preceding unsigned comment added by 96.246.65.22 (talk) 21:25, 8 May 2009 (UTC)

Lucy Betts.

There are websites claiming that Lucy Betts is the oldest survivor in Britain, rather than Nusrit Shaheen. —Preceding unsigned comment added by 24.17.118.100 (talk) 12:42, 21 April 2010 (UTC)

Genetics

I think it would be educational and worthwhile to mention the way the disease is passed genetically (aka. if it is autosomal dominant, recessive, etc.). I personally am interested in this information and feel that many others are probably curious as well. 70.72.84.188 (talk) 02:51, 10 June 2010 (UTC)

HI Girl on National Geographic Channel?

Okay, I'm confused. I just saw a show on the National Geographic Channel, half of which whas on a teenage girl who suffered from Harlequin Ichthyosis; I heard the narrator very clearly, several times. Unfortunately, the contents of this article barely sounds like the same disease she suffers from, and the show went into her symptoms, and the genetic reasons behind it, in great detail.

67.251.76.94 (talk) 04:30, 16 June 2010 (UTC)

images

just cos wikipedia is not censored doesn't mean you should put disturbing images up, if people really want to see an image of it you can put a link on the page. it is pretty grotesque. —Preceding unsigned comment added by 86.156.170.254 (talk) 14:09, 31 May 2008 (UTC)

It's just a diagram, not even an actual photograph. There ius nothing 'grotesque' about it. faithless (^speak) 05:56, 1 June 2008 (UTC)

lol--216.165.95.64 (talk) 10:43, 20 April 2009 (UTC) WTF happened to the image? If you consider that grotesque, you need help. Put it back right now. --216.165.95.64 (talk) 06:30, 1 May 2009 (UTC)

Unless there are a number of reasoned objections I will reinstate the diagram shortly. Hadrian89 (talk) 15:52, 12 May 2009 (UTC)

I agree that some people may want to add images of Harlequins, although they are slightly disturbing, so add a link. —Preceding unsigned comment added by Theukvato (talk • contribs) 07:39, 2 July 2010 (UTC)

Last paragraph on 'History' section

(Please, I attentively ask by own experience: Never search for images on this disease, unless you are prepared to see something very strong, do not do it if you are underage).

I doubt Wikipedia's purpose is to advise.. This seemed unnecessary so I deleted it. — Preceding unsigned comment added by Constellus (talk • contribs) 01:01, 3 April 2011 (UTC)

images

A picture might be to goatse. there is already a illustration and if anyone needed to see an image, they can google it like so:google image search of harlequin ictcyosis School district 43 Coquitlam^{Learn with us!} 16:21, 19 September 2011 (UTC)

Documented Cases/Genetic Probability

how many known cases of HI have their been? 1 in how many carry the gene? --99.101.160.159 (talk) 02:34, 3 January 2012 (UTC)

Pictures

Much discussion is going on in whether pictures should be added. I would highly disagree to add pictures of Harlequin babies for the reason that... Well, they seem quite disturbing, and if anyone were to stumble upon this by accident, they wouldn't see anything they don't want to. If you really want images, add a link for it at least. --Theukvato (talk) 07:34, 2 July 2010 (UTC)

If human penis has a picture, why harlechin babys can't have it? Is absurd 190.199.106.138 (talk) 02:30, 16 June 2011 (UTC) http://en.wikipedia.org/wiki/Wikipedia:What_Wikipedia_is_not#Wikipedia_is_not_censored !!!!!!! — Preceding unsigned comment added by 190.199.106.138 (talk) 00:45, 20 June 2011 (UTC)

It's very frustrating to have to google for photographs of people with this condition just to get an accurate idea of its appearance. Given that the article mentions people living reasonably full lives with this condition, it also seems cruel to claim that their appearance is so horrifying that it cannot be shown on wikipedia. Threepenpals (talk) 08:47, 30 June 2011 (UTC)

Well, one point is that most photos of people with HTI aren't available under Wikipedia-compatible licenses. And we can't make fair-use claims on the existing photos, because it's theoretically possible to produce suitably-free photos. DS (talk) 12:46, 30 June 2011 (UTC)

Eh, go to the talk section of anencephaly & look at the massive arguments over the images there. Personally I'd be in favour of real images, but I'm sure a ton of people would complain. — Preceding unsigned comment added by 203.5.70.1 (talk) 07:12, 10 July 2012 (UTC)

Verify

Scour eg Depleted Uranium and its constituents as well as Desert Storm/Operation Iraqi Freedom. At least the former should provied several leads to research papers. Dysmorodrepanis 21:29, 7 February 2007 (UTC)

This long predates the use of depleted uranium and desert storm.

Don't let troublesome facts get in the way of your nutty threory though. — Preceding unsigned comment added by 63.152.94.226 (talk) 21:54, 1 August 2013 (UTC)

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. [[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 [2] mentions a report in which a harlequin baby survived to 9 years (further Googling found that that report was published in 1989. [3]) 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

There is a 24 year old who suffers from the condition who is on This Morning (TV series) at the moment, so yeah, it is possible, just really hard. I really feel sorry for that girl Moozipan Cheese (talk) 09:56, 31 March 2008 (UTC)

There is a 19 year old boy by the name of ryan gonzales and he is a harlequin.Cpt Sprinkles (talk) 12:51, 27 June 2010 (UTC)

Oxnard, California mid 1960's, my family lived in the Pleasant Valley Estates housing track. There was a family , the Zagarnagas who had 2 daughters. Lisa Zagarnaga had this exact disease. At the time, I do not think there was a name for it. She had been told, 4 people in the entire World had her condition, her and her Uncle were two. She was thin, dry flakey from head to toes. She had thin, dry sparse hair, eyelashes. Salt baths were her routine. Her father was a Sheriff. Her younger sister, Cherise was normal. Lisa's school photos can be seen from Ocean View Jr High. (----) 11-14-13 — Preceding unsigned comment added by 76.14.57.87 (talk) 01:34, 15 November 2013 (UTC)

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