Talk:Haemophilia

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To-do list for Haemophilia:	edit · history · watch · refresh
Here are some tasks you can do: Verify: References, especially statistical ones. Expand: Lead Try to give some general impression of what it is like to have hemophilia, and to be in such a family. Life expectancy of a hemophiliac? More details on costs of treatment, both for family and health systems. Other: More images needed, e.g. photographs of bleeds, proteins involved etc.
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	It is requested that a photograph or photographs be included in this article to improve its quality.
	The Free Image Search Tool (FIST) may be able to locate suitable images on Flickr and other web sites.

Contents 1 Life Expectancy 2 Maurice of Battenburg 3 Haemophilia B 4 Hemophilia and von Willebrand's disease 5 Split out? 6 Blood Fetish????? 7 Missplaced emphasis? 8 History 9 Alex of Southampton, NY, USA 10 Requested move 10.1 Survey 10.1.1 Oppose 10.1.2 Support 10.2 Discussion 11 Requested move 11.1 Survey 11.2 Discussion 12 Please read 13 Bleeding in carriers 14 Haemophilic female 15 Vandalism 16 History, Possible Revert 17 Bleeding disorder redirect incorrect 18 Spelling 19 Links 20 Please help me 21 Michael Dunn's Coolness? 22 Haemophila → Hemophilia 23 Carriers of haemophilia 24 Treatment 25 Brain bleeds 26 Bayer / Vandalism - Second locking the article

[edit] Life Expectancy

I removed this section because it wasn't really true or referenced. From the early 1900s to the 1970s life expectancy went up to almost 65 (which is close to normal) and then HIV lowered it back down to around 25 in the 1980s. There is also quality of life to be considered, and I don't believe you can have any real information on it all at this point. —Preceding unsigned comment added by REGULAR-NORMAL (talk • contribs) 13:43, 21 January 2008 (UTC)

[edit] Maurice of Battenburg

Are you sure that Prince Maurice of Battenberg had hemophilia?? He died in service fighting the German forces in 1914; he would not have been able to join any military force if he had hemophilia. Arno 07:27, 16 Aug 2004 (UTC)

Some biographies on Queen Victoria and her descendents say that Beatrice passed the gene on to both Leopold and Maurice, while others say just Leopold was a sufferer. His cousin, Prince Waldemar of Prussia had hemophilia, but he enlisted, albeit with a desk job. Leopold also enlisted, so it wasn't out of the question. Maurice, if he had hemophilia, might have had a job that would keep him out of fighting, but it was a war, chances are, he found some way to get into action. Morhange 02:11, 01 Jul 2005 (UTC)

[edit] Haemophilia B

There seems to be a contradiction regarding Haemophilia B. It is first mentioned to be x-linked recessive (paragraph 1 under Genetics), the same as Haemophilia A, and later tagged as autosomal recessive (under Forms). I believe that the former is correct (x-linked recessive), but an expert should probably make the judgment.

I'm not an expert, but I've made the judgment. JFW | T@lk 11:48, 3 Jan 2005 (UTC)

[edit] Hemophilia and von Willebrand's disease

What is the difference between a mild hemophilia and von Willebrand disease (vWD)?

Very small, apart from the underlying defect and the potential treatment. Hemophilia also causes a slightly different form of bleeding - it is more in muscles and joints. vWD, in contrast, affects the skin and mucous membranes. JFW | T@lk 21:13, 25 Apr 2005 (UTC)

[edit] Split out?

Most of the content in "Genetics", "Probability", and "Table" seem to better belong in X-linked recessive. Any thoughts about/objections to moving that content there? --Arcadian 06:07, 4 December 2005 (UTC)

Copy it there if useful, by all means. But I don't see why it should be deleted from this article. You may be right on grounds of logic; but we have to think also in terms of usefulness. I suspect that for many readers those are the key parts of the page, in fact. In principle anybody who wants to understand the descent of hemophilia could of course follow a link to x-linked recessive -- but will they actually? I think we should err on the side of being educational -- somebody might actually learn something this way. Doops | talk 07:47, 4 December 2005 (UTC)

I think this material should be summarized, with a link to x-linked recessive. However, I'm willing to have more here than I might otherwise, on account of hemophilia being the example many texts use to introduce this kind of inheritance. My big concern is what seems to be misplaced emphasis (see the note further down the talk page). The discussion of hemophilia is completely dominated by the discussion of inheritance and the history section. Maybe some more discussion of the mechanism of the disorder is in order. Or its treatment. Or, in the history section, we could focus more on medical history (i.e., when the disease was discribed, when the gene was found, when synthetic factor eight was developed, current research in genetic therapys, etc.) -- AK

[edit] Blood Fetish?????

My nephew has Hemophilia and I'm pretty sure I wouldn't want him to link to a page discussing 'blood letting' and whatnot. I'm not saying we should rate pages based on it's content or whatever. I'd just like to know how his disease is related to sex acts! Before anyone gives me the "...doesn't necessarily lead to sex" excuse, I'm just ASKING. I don't understand how an illness that doesn't allow a person's blood to clot properly (very dangerous) correlates to deliberately putting oneself in harms way by cutting themself and letting someone else drink it. Even MORE dangerous -- drinking the blood of someone ELSE!

Hey, no offense. If you want to pretend you're a vampire in this day and age, all I can say is GOD BLESS 'YA and be my guest, but what does that have to do with a serious illness such as Hemophilia? I apologize, in advance, for 'shouting', but this upset me just a bit. Please advise.........SBernheart

You are completely right. The Blood fetish page does not even mention this false etymology. If the bleeding condition had not been described before some moron thought blood was sexy, the fetish would have been named that way. But history sometimes makes things more difficult.

On a more policy-related note: Google "blood fetish" & hemophilia yields 41 results, with Wikipedia bang at the top. Alone, "blood fetish" Googles >80,000. There is therefore no need to disambiguate this. Really. JFW | T@lk 22:02, 30 January 2006 (UTC)

The medical condition and the fetish have the same word as their technical term. It's just like "Hydrophobia" can either mean rabies or the fear of water. Two different things with the same name.163.11.83.16 20:26, 19 February 2007 (UTC)

[edit] Missplaced emphasis?

I can understand the extensive discussion of the way hemophilia is inherited. It would be sufficient to omit it and link to a general discussion of sex-linked disorders, but because hemophilia is such a textbook example of sex-linked inheritance, it isn't surprising to find that discussion here. But isn't the extensive discussion and family tree of old european hemophilia cases relatively unimportant? How does this contribute to a naive wikipedia user's understanding of hemophilia? Especially a user who is interested as a patient or a friend of a patient with the disorder?

It is of immense historical interest. Wikipedia medical articles are not sterile reviews about conditions, they should include the maximum of related information in the humanities. Czarevitch Alexei had haemophilia, and his disease caused the inclusion of Rasputin in the royal entourage, with the consequences that are well known. It massively changed public perception of this condition. JFW | T@lk 22:05, 30 January 2006 (UTC)

[edit] History

Giangrande, whom I cited extensively in coagulation, has also written usefully on the history of haemophilia[1]. This may be a useful source. JFW | T@lk 21:58, 2 February 2006 (UTC)

[edit] Alex of Southampton, NY, USA

Hey I just wanted to say that this a great article... Speaking as a high-schooler, and more humanities oriented student, this was really easy to read and digestible. Usually the science articles on Wikipedia are cryptic and difficult so this was a relief. Sorry I just wanted to say thanks.

[edit] Please read

About User:Trialsanderrors's point on æ being archaic above. This article proves my point that æ is indeed used today. Random the Scrambled 12:49, 9 June 2006 (UTC)

From that article:

"In the UK, ae is used in place of æ, so encyclopaedia is correct in the UK."

You say ae isn't used and æ is, and the article you are putting forward as evidence says the complete opposite. What about this proves your point exactly? Personally, I prefer æ, but to say that ae is incorrect is just plain wrong. Martin 00:08, 13 June 2006 (UTC)

From same article:

It is common to see it rendered, albeit incorrectly, as "ae", most often by computer users and typewriter users who are unable to render the letter properly due to technological limitations or being unaware of how to do it; a recent example of this is the rendering of the television series/movie title Æon Flux, which often appeared in the media and elsewhere as "Aeon Flux".

If we're both correct, then the article contradicts itself. And if you're looking for another explanation, I'll say it. I found out somewhere that ae is pronounced ai whereas æ is said as mentioned in that article. Does this mean that the British say it differently? Random the Scrambled 14:34, 13 June 2006 (UTC)

The article does not contradict itself. It says that (a) in modern English. ae is often used in place of æ, and (b) when trying to write æ, some people simply substitute ae because they don't know how to type æ. Martin 18:25, 14 June 2006 (UTC)

[edit] Bleeding in carriers

Female carriers of haemophilia A and B may be prone to bleeding even at moderately lowered coagulation factor levels[3]. JFW | T@lk 21:56, 21 June 2006 (UTC)

[edit] Haemophilic female

This article does not mention the myth that Haemophilic females cannot have children. Sandy June 05:32, 3 July 2006 (UTC)

If they missed it on purpose, then it's because it is a myth, thus being untrue. Random the Scrambled 14:16, 8 July 2006 (UTC)

[edit] Vandalism

Does anyone else think that this page should possibly be semi-protected? It's been attacked by quite a lot by vandals recently. Charlie MacKenzie 16:10, 10 October 2006 (UTC)

[edit] History, Possible Revert

Seems Haemophilia article has been stripped the picture has been taken off and it seems much less clear, was there a reason or would it be wise to revert? Drew 06:27, 13 October 2006 (UTC)

[edit] Bleeding disorder redirect incorrect

Haemophilia is only one type of coagulopathy which in itself is only one of three broad categories of causes of bleeding disorders... in light of this it seems silly for Bleeding Disorders to redirect immediately to haemophilia.

[edit] Spelling

Spelling on the page keeps changing from 'haemophilia' to 'hemophilia' and back again. Can we not just pick one and stick with it? —The preceding unsigned comment was added by 82.30.81.131 (talk) 18:59, 4 March 2007 (UTC).

I agree with this thought. Any thoughts on which it should be? Whichever we pick, it should be consistent throughout the article, which is why I have been reverting people who only change some of the entries... -- Whereizben - Chat with me - My Contributions 13:51, 19 March 2007 (UTC)

I would say the best thing is to be consistent with the title of the article. Unfortunately, that's liable to touch off the big debate about what THAT should be again. For what it's worth, I'm a Brit and thus spell it with the A, but if the consensus is to standardise without it, that's OK by me. McNutcase 17:26, 19 March 2007 (UTC)

[edit] Links

Should this page have links to the pages for famous people with hemophilia? (Tsarevich Alexei Nikolaevich Romanov, other members of british descent) I happen to have severe hemophilia A

Asha'man Nellis, Jearn Rift Sept of the Codarra Aiel 11:56, 21 March 2007 (UTC)

[edit] Please help me

hi my name is 'H' i m frome pakistan...plzzzz plzzz help me.i m in love with a girl affected with haemophlia plzz tell me ca i marry her and will our childern also affected by the haemopilian.kindly help me out.i will be so greatfull to you.can u plz send me ur adviceanf thought to my id anjanaylog@hotmail.com —The preceding unsigned comment was added by 203.128.22.88 (talk) 08:08, 1 April 2007 (UTC).

[edit] Michael Dunn's Coolness?

"However, Michael Dunn is the coolest hemophiliac that has ever existed...no questions asked."

That sounds like a bit of a joke. Should it be removed? —The preceding unsigned comment was added by 81.86.115.184 (talk) 12:58, 14 April 2007 (UTC).

[edit] Haemophila → Hemophilia

As a person with hemophilia, I find it confusing the the hemophilia page is named "haemophilia", when the World Federation of Hemophilia, the National Hemophilia Foundation, and the Canadian Hemophilia Society (of which I am a part) all spell their name the same way.

1. This is the most common name and therefore should be used.
2. As shown in the links above, this is a case of self identity.
3. Wikipedia is not a democracy.

Thank you. :) -bladebot 23:19, 20 April 2007 (UTC)

No, We don't have policy to favour US English spellings over UK English spellings. The UK English spelling is Haemophila. Wikipedia:Manual_of_Style#National_varieties_of_English Secretlondon 23:55, 20 April 2007 (UTC)

I'm sorry, I do not understand the connection between your point and my points. -bladebot 00:07, 21 April 2007 (UTC)

You are asking to change the title (which is in UK English) to a title in US English. You've given the names of three organisations that use the US Spelling and a google test. I have said that we have a policy not to move pages from UK to US spellings (or vice versa). Wikipedia:Manual of Style (national varieties of English) may help more. Secretlondon 00:11, 21 April 2007 (UTC)

I agree with you that we shouldn't favour US spelling over UK. Or Canadian spelling over UK. Or the Chinese spelling, or the German spelling, or the Hebrew spelling, or the Japanese spelling... Okay, Russian prefers haemophilia... but the Arabic spelling... I know that many of these languages have their own spelling of the same term, but apparently these are the English spellings that they would use to find hemophilia. Simply changing a title from one dialect to another isn't in itself a ground for not doing so.

1. It is the most common English term: "We want to maximize the likelihood of being listed in external search engines, thereby attracting more people to Wikipedia."
2. The World Federation of Hemophilia, being the first international Hemophilia foundation, chose the simpler term. "When naming or writing an article about specific people or specific groups always use the terminology which those individuals or organizations themselves use."
3. And finally, from the links you gave me: "If there is a strong tie to a specific region/dialect, use that dialect."/"Try to find words that are common to all."

These points make sense to me, but maybe I'm doing something stupid and not realizing it... Sorry for all the boldness... :/ -bladebot 20:58, 21 April 2007 (UTC)

If nobody has any arguments against, then I shall change the article's title (and all subsequent mentions of the disorder) to "hemophilia" for the reasons mentioned. -bladebot 02:32, 2 May 2007 (UTC)

As long as it's made clear that the correct British English spelling is haemophilia, I'm fine with regularising to "hemophilia", if only to put some kind of end to the flames... McNutcase 13:33, 5 May 2007 (UTC)

I thought flaming refers to messages with hostile intent... I can assure you I have no such desire to hurt. We appear to be using both spellings interchangeably, and instead of looking at the results of the votes, I did what the guidelines in Wikipedia told me to do. I know they are but guidelines, but they are here for exactly this purpose, are they not? -bladebot 00:02, 9 May 2007 (UTC)

All three of your arguments are weak, though. The first ("most common word") point is superficially attractive; but it could be applied to practically every article on a world-wide topic: the US hegemony is strong. Yet the naming conventions still bothers to have that "don't change dialect" rule -- you're obviously far from the first person to notice this; yet the guideline remains. Your second point is irrelevant -- we're writing about the disease, not the organization. And I don't understand your third argument -- there is no strong tie to a specific region / dialect; there is no one spelling that is common to all. Doops | talk 00:12, 9 May 2007 (UTC)

Okay, I'm more comfortable now that there is a debate now. For the first argument, I've already made the point that hemophilia is not only common in the US, but is world-wide, regardless of how much influence the US has in that result... You are correct: The US hegemony is strong. The second point is relevant: If homosexual became a derogatory term, I can assure you that whatever the accepted term among homosexuals is would become the term used for the main article in Wikipedia. A haemophiliac is a person with haemophilia, and haemophiliacs and their families are the people responsible for these organizations. That is why it is self-identification. Third, you are correct, there is no spelling that is common to all; there is only a spelling that is common to most. -bladebot 22:50, 16 May 2007 (UTC)

Meh, there's really no point in changing it. You only should change it if there is a proper reason to. Your point one is valid, but point two is not (we are naming the condition, not the North American-based organisation). Your argument of self-identification is not a strong one at all (see [4]. And anyway, there's no actual point in changing it - so I suggest to keep it as is. -- Boothman _/tɔːk/ 13:26, 17 May 2007 (UTC).

If there isn't already one, we should add a redirect. If there is, there's no reason to complain. You can still find your way here. Oh, and Australia also uses UK spelling. Kamahl 07:30, 22 May 2007 (UTC)

Ultimately, Bladebot, your argument in essence is that the Wikipedia as a whole should use US spelling by default (perhaps using British spelling for specifically British articles, but no others). As such, it's got a scope far beyond mere Hemophilia and should be discussed elsewhere. Doops | talk 07:35, 22 May 2007 (UTC)

You've made valid points. I agree. -bladebot 15:02, 24 May 2007 (UTC)

Do we at least have a consensus that whichever spelling is eventually decided upon for the article's title, the spelling within the article should be consistent? As I've said, I don't much mind which is chosen for the title, since the other will always redirect, but having the spelling change in the body for no apparent reason is bad form, in my opinion... McNutcase 07:06, 26 May 2007 (UTC)

Fixed. All occurrences of "hemophilia" have been changed to "haemophilia", except where "hemophilia" is the title of a reference. -bladebot 05:42, 26 September 2007 (UTC)

[edit] Carriers of haemophilia

According to the article "If a female gives birth to a haemophiliac child, she is a carrier for the disease." This is surely only true if there are other affected family members. Should her son be the first case of haemophilia in the family, there is a 20% chance that he has a de novo disease causing mutation. (This according to GeneReviews.)Nyosi 08:48, 7 June 2007 (UTC)

My son has Severe Hemophilia A and I am not a carrier - his case, as with others - was a spontaneous mutation. 76.30.52.19 16:22, 7 September 2007 (UTC)

[edit] Treatment

Paragraphs 4 and 5 implicates Baxter and other manufacturers in the infection of patients with HIV, implies negligence on their part, and references lawsuits against Baxter. The article reference (reference 8) is specifically about a lawsuit against Armour Pharmaceuticals (now part of Sanofi-Aventis). This article does not mention any manufacturers other than Armour, and in fact mentions that Armour used a heat-treatment step that was lower in temperature than the other manufacturers. Unless other references are incorporated, these paragraphs should reference Armour only.Ekwhite (talk) 20:15, 13 December 2007 (UTC)

Bayer should be up there too —Preceding unsigned comment added by REGULAR-NORMAL (talk • contribs) 05:04, 2 February 2008 (UTC)

[edit] Brain bleeds

Review doi:10.1111/j.1365-2141.2007.06949.x JFW | T@lk 10:01, 24 January 2008 (UTC)

[edit] Bayer / Vandalism - Second locking the article

I have been to this page a few times and the bits about Bayer and their role in the 1970's AIDS and Hep outbreak among hemophiliacs keeps getting deleted and added again. I don't see mention about it in the Discussion page and don't believe that there is a Wiki reason for it to be deleted. I am assuming it is being deleted because it makes many people and companies look very bad. Considering the outbreak was to the hemophiliacs what the Atomic Bomb was to the Japanese (infecting so many hemophiliacs with generations of ramifications), it is a pretty big deal and should have more than a small paragraph dedicated to it in this article. At the very least it should have a stub article dedicated to it.

I second locking the article (someone else mentioned it above). This is obviously a controversial article on what is in included, and not included and how it is spelled, and instead of discussing anything, people keep going in and deleted and adding whatever they please without regard to Wiki-Standards. I already put in a request for indefinite semi-locking. Chexmix53 (talk) 20:37, 5 March 2008 (UTC)

- I just checked and they denied my request for the page to be locked. Chexmix53 (talk) 20:48, 5 March 2008 (UTC)