Talk:Haemochromatosis

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Contents

[edit] WP Spelling conventions

Crusadeonilliteracy, I am sorry for moving the page, but AFAIK Wikipedia endorses US spelling and I simply arranged for the page to follow US spelling (hemo- instead of haemo-). I personally favour (see?) the UK spelling. Will you please support a move of the page body to hemochromatosis and use haemochromatosis as a redirect? Jfdwolff 10:32, 21 Mar 2004 (UTC)

No, it does not endorse US spelling. Morwen 12:28, Mar 21, 2004 (UTC)

I believe that wikipedia should not and as a rule does not endorse US spelling - English originated in england. Benjaminstewart05 11:52, 12 April 2006 (UTC)

Sorry, let's rephrase that: Wikipedia uses US spelling. Could we have a vote on the correct spelling of Hemochromatosis. Jfdwolff 16:24, 21 Mar 2004 (UTC)

See also American and British English differences, where a number of ae-words are mentioned. As the vote has not received any responses, and User:Crusadeonilliteracy has not responded, I have now moved it to Hemochromatosis. Please do not revert without discussing this on the talk:hemochromatosis page, because this is getting a bit ridiculous. Jfdwolff 20:26, 22 Mar 2004 (UTC)

Jfdwolff, I suggest you read Wikipedia's policy on US vs British spelling before making statements about what Wikipedia does, or does not do.. From Wikipedia:Contributing FAQ:
"People are writing in all sorts of English. However, it is good form to keep usage consistent within a given article. The official policy is to use British spelling when writing about British-related topics, and American for American-related topics. More general topics can use any one of the versions, but should be consistent within the article. "
Nobody responded to your "poll" because nobody needed to. Given that Crusadeonilliteracy was the one who did the work of merging the duplicates, it's up to him to choose which spelling to use.
You also only gave everyone 4 hours to respond to your call for a vote on the spelling, which is entirely unreasonable for a low-traffic page such as this.
-- Cyrius 04:51, Mar 23, 2004 (UTC)
And see the "Usage and Spelling" section of Wikipedia:Manual of Style, especially:
"If an article is predominantly written in one type of English, aim to conform to that type rather than provoking conflict by changing to another."
-- Cyrius 07:12, Mar 23, 2004 (UTC)

Hello Cyrius, welcome to the debate. And also thanks for reverting without discussing this nicely on the talk page. Concerning the 4 hour wait, this is factually incorrect. My first message was there for several days, leaving Crusadeonilliteracy plenty of time to offer his comments.

Concerning the correct spelling, Angela was so kind to inform me about the language policy of Wikipedia, without reverting to and fro. Personally I prefer the UK spelling but I was under the impression that Wikipedia was uniformist in its spelling. If this had been discussed, instead of resorting to a revert war, I might have opened my eyes a bit earlier. Jfdwolff 19:14, 23 Mar 2004 (UTC)

Excuse me, I misread so I was off a day. It was 28 hours between your "can we have a vote" at 16:24, 21 Mar., and the move at 20:20 22 Mar. Hardly "several days" for the poll, and still not very long.
I informed you about the language policy and corrected your mistake. Why did I fix it instead of waiting for you to realize your error? Because I'm an insensitive jerk and I prefer having a problem solved quickly to making everybody happy.
Additionally, you copied the wrong version, so an article with UK spellings was at a US spelled title, and that just ain't right.
The real irony here is that I'm from the US, and loathe the UK "ae" spellings. I'm going to let your little edit of one of my comments go as an accident.
-- Cyrius 20:33, Mar 23, 2004 (UTC)

Hi Cyrius. No hard feelings, please. Thank you (no sarcasm) for improving on my UK English. I'm Dutch (living in the UK), so there might be the odd Dutchism there.

I'm really not sure what little edit I made in one of your comments!! I certainly don't recall doing so. Jfdwolff 16:32, 24 Mar 2004 (UTC)

Thank you all for the "English" lesson. As a person diagnoised with Hemochromatosis I find the debate trivial and insensitive to those who visit the site seeking knowledge of the disorder. WRR 22:59, 6 December 2006 (UTC)

That's why this is the talk page, which does not contain knowledge of the disorder but minor quibbles between the various contributors. No insensitivity was intended, and I hope your medical progress has been satisfactory. In any case, please let us know if the article itself is deficient in any way, and whether any particular information is needed. JFW | T@lk 19:05, 24 December 2006 (UTC)

[edit] Merged from Talk:Hemochromatosis

Yes, this page was moved from haemochromatosis, because that is the accepted American spelling. There were no responses on the Talk:Haemochromatosis page when I called for a vote. Please do not revert without discussing this on this page. Thank you. Jfdwolff 20:22, 22 Mar 2004 (UTC)

Generally, the Wikipedia convention is to let the originator of the article determine which spelling convention to use. Haemochromatosis was started in August 2002, Hemochromatosis wasn't until a month later. - Hephaestos|§ 04:11, 23 Mar 2004 (UTC)


  • Another problem is that this is the English Version, not the American Version. Frankly, while I admire D. Webster's many talents and towering intellect, he was not a little misguided in this respect.
  • That said, this insistence on the American only spelling (we'll not go into the fact that it was only one guy who brought this about and it has been shoved down our collective throats with out so much as 'by your leave.') is a little obnoxious, over-bearing, a little if not a lot snobbish, and has earned the enmity - well deserved I might add - of native and non-native speakers everywhere. [On a personal note, I am a Midwesterner, born in a Free State and raised in the Border States. I have extensive experience with various versions of English overseas and a graduate degree in applied lingusistics and I find this insistence on the One True Way more than a little pretentious. Our only compensation is that the anti-American everything groups are sillier. But I digress.] Let the editor choose.
  • We have enough problems without shoving this pseudo-elitists perspective down the throats of those educated in very good schools on other parts of the planet.
So, 'colour' reads the same as 'color', 'centre' as 'center' and so forth. I have no problem with this and have extensive experiences with non-native speakes to know that they may note the difference but do not find it a stumbling block--the insistence on only one version does create problems though. Malangthon 01:24, 16 March 2007 (UTC)

[edit] Article quality

However it's spelled, the article is too full of/dependent on medical terminology. Can someone start work on systematically correcting this, and improving the article's quality in other ways? -Fsotrain09 16:57, 19 August 2006 (UTC)

Are there specific edits that you can do yourself? I'm not sure how an encyclopedic article about a disorder can avoid having some if not many uses of medical terminology. As is, many of the technical terms are linked to further articles for deeper explanations. -- Tomlouie | talk 14:08, 29 August 2006 (UTC)

[edit] Baldness as a symptom?

Is baldness a symptom of Haemochromatosis or other iron overload disorders? Is so, maybe it should be listed as such. The reason I ask, is my doctor had me undergo iron level testing to ensure my baldness was not caused by high iron levels. 202.10.86.59 04:21, 21 October 2006 (UTC)

As far as I can tell, baldness may be caused (in part) by high iron. Hemochromatosis is only one cause of high iron. Baldness would be common to all causes of high iron.

I know this is a bit late in the debate, but my iron levels were found to be extremely high end of the scale, and I've still got all my hair :-) Almost-instinct 13:49, 13 May 2008 (UTC)

[edit] Plague

Sharon Moalem has apparently stated that haemochromatosis has been preserved on an evolutionary level as a defense against the bubonic plague. Evolu (talk · contribs) feels this should be included into this article, despite the fact that this is a highly speculative matter that has not reached wide circulation and presently has few other supporters in the field. The same researcher also claims to have linked HHC with Alzheimer's disease, a rather novel link indeed.

Not every speculative theory needs to be included into Wikipedia. This applies especially to evolutionary theories, which are untestable in their very essence (unless one can construct an experiment that lasts 800 years and exposes healthy volunteers to Yersinia pestis). JFW | T@lk 18:58, 24 December 2006 (UTC)

Speculation as to why more than 30% of Europeans carry Haemochromatosis mutations today more than 30x any other population deserves to be included in the epidemiology of this disease User:Evolu

No, it does not. They are many other reasonable explanations (e.g. a diet low in iron giving a survival advantage to those who avidly absorb iron). This work requires much more exposure before it's suitable for inclusion into a general encyclopedia. JFW | T@lk 21:34, 24 December 2006 (UTC)

I have to agree and disagree with both of you. There is no reason why these highly speculative hypothesis should be given a large portion of the article true, but if these do pop up in the realm of legitimate research, well, then a brief synopsis and a source can be given since this stuff does get out in the mainstream press and pop science sources. Educating (which is a primary goal of WP) involves the process of hypothesising and learning how to read the information critically. Otherwise the editing of this article and many other like it become the domain of very pushy people who leave the entire WP rationale in the dust. If you want some sort of exclusive control that will be imposed, join Citizendium. However, remember, the final decisions on articles will be made by people who have academic creditials in their respective field. Malangthon 17:59, 17 March, 2007 (EPT)

[edit] Sources

  • User Jfdwolff wrote on my talk page:

I see you added some sources. I think web-based references like the ones you added are not the ideal type of reference here. After all, these are written with the use of articles from medical journals. We might as well cite the journals themselves, especially haemochromatosis, which has been reviewed very thoroughly by various authors recently (such as Pietrangelli in the NEJM a little while ago). JFW | T@lk 15:11, 12 March 2007 (UTC)

  • I respond:

I see the point but believe it is in error. Let me explain-we agree and disagree.

A. The web based source means it is accessbile. A primary concern in research anywhere is accessibility and these journals cost money. Readers in small towns in New Zealand or Vietnam will not have access to the journals. It is that straightforward.
B. On the other hand, the very fact that a web based article has a primary source should be noted and the guide provided. In that way both ends of the economic spectrum will have access.
C. These deleted sources are some of the most high profile and credible sources extent and that is sufficient.
D. The sources are well within the requirements of the Wiki Policy and should not have been deleted simply because someone with a large research budget or living in a city with good libraries can go one better.

To that end, we have provided the reader with expert sources that are accessible and recognised worldwide by specialists in this field. Ergo, we have fulfilled the function of the encyclopedia well. So, please replace the sources and do remember that a school teacher or health care worker in Horowhenua or Hue will not have a library budget that can handle this sort of expense nor will the average person have access to a private library like the Linda Hall. Malangthon 01:08, 16 March 2007 (UTC)

As an encyclopedia Wikipedia should aim to base itself on primary sources rather than secondary ones. It is not strictly necessary for those sources to be accessible; I'd much rather they are the highest-quality sources of information. In medical articles, this equals peer-reviewed material from established journals, preferally those in English with a high circulation. This has been the standard on all other medical articles, and I don't see why this article should suddenly depart from that tradition. Look at featured content such as multiple sclerosis, asthma and prostate cancer.
You are free to raise your concerns on WP:CLINMED, the forum for all medical articles. JFW | T@lk 15:07, 16 March 2007 (UTC)
It is still an encyclopaedia and the sources are consistent with WP Policy. WP is not committed to providing primary sources and the ones I provided are well within the regulations here. They have been deleted in contradiction of WP policy. Furthermore, this is not a medical reference for professionals, it is an encyclopaedia. The journals are written for practioners and researchers, not the same audience at all. So, no, the goal here is well and truly fulfilled by using CDC, NHD, etc. I think you have lost sight of what the WP is. Wiki=quick, pedia=learn or educate: Not going to fulfill WP goals if the language and the sources are exclusively bogged down in highly specialised jargon.
The journals are not beyond the pale certainly, they are simply not an exclusive source. Furthermore, the CDC and the other sources are some of the most highly regarded in the field. The assertion that they have no merit here is simply ludicrous.
As for encyclopaedia sources, look at the sources for Britannica. How many primary sources are used? Here is a classic--the only existing contemporary source for the Roman's versus the Goths at Adrianople was written by a guy who was not even there. And that is the best source for the battle itself, a battle that arguably altered the course of western history. Does Britannica employ this source directly? Take a look.
Once again, let me also emphasise that accessibility is very much an issue given that common knowledge is hardly common if not accessible and that many people reading WP can not understand these primary research journals and many of the editors here in WP are not competent to provide coherent synopsis of them either. So both ends of the WP delivery system are hamstrung. The WP is a starting point for any number of objectives and high school students, for example, are not going to be writing their papers on the basis of a medical or molecular biology journal and so too this is true of the parents of children who have concerns in this area. You show me one physician who hands his patients a copy of a medical journal article to educate them on the topic and I'll show you 10 that provide brochures using synoptic overviews with simplified language.
Please replace them and comply with WP guidelines. You are imposing strictures that are not WP policy and could ultimately defeat the whole point of WP if enough people were to start imposing their own guidelines as you have done. Malangthon 17:49, 17 March, 2007 (EPT)

Just popped over to the WP:CLINMED and no where does it say that the Centers for Disease Control are out of bounds. Malangthon 18:04, 17 March, 2007 (EPT)


    • I don't mind CDC website (think it's great) or University published webpages (providing they aren't [[diploma mill]s). These are accountable and verifiable. I'm feeling a little bit suss about diagnose at home style websites like MayoClinic. This is a little harder to verify or bring to account (CDC is government related, universities are supposed to ascribe to certain standards of academic integrity). I won't oppose the inclusion of such links. But I will certainly uphold that they are best to be avoided. I agree accessibility is an issue, but it does not overtake verifiability and other parts of WP:RS.--ZayZayEM 15:54, 18 March 2007 (UTC)


OK. I'll be gentle. Pick up the phone there at home, call a medical school or hospital in your area. Ask them if The Mayo Clinic, Rochester, Minnesota is a suspect source. Let us know who you talked to and where. [NB: If they do not know anything about Mayo, you need to wear a bracelet saying, "In case of an emergency, Do not take me to (that) Hospital under any conditions!"]. You can also email the Centers for Disease Control (ask your source about them too) in Atlanta and ask them about Mayo. Or email Harvard Medical School, or the Royal College in London or The World Health Organisation. Let me make a comparison, calling The Mayo Cinic suspect is like saying the Louvre is a flea market. Not to put too fine a point on it but I hope this gets the point across. Malangthon 21:25, 18 March 2007 (UTC)
Click on the Wikipedia article here[1] for a synopsis of Mayo Clinic. I disagree with the rating given by US News though. Here is the Clinic website [2] Malangthon 21:40, 18 March 2007 (UTC)
Maybe I should have done a wiki search for it first. They seriously need a decent website designer so they don't look like a shoddy quack-job self diagnosis site.--ZayZayEM 00:47, 19 March 2007 (UTC)

See my concerns below. JFW | T@lk 22:38, 18 March 2007 (UTC)

[edit] Time to get real

This section:

Imaging features
Clinically the disease may be silent, but characteristic radiological features may point to the diagnosis. The increased iron stores in the organs involved, especially in the liver and pancreas, result in an increased attenuation at unenhanced CT and a decreased signal intensity at MR imaging. Haemochromatosis arthropathy includes degenerative osteoarthritis and chondrocalcinosis. The distribution of the arthropathy is distinctive, but not unique, frequently affecting the second and third metacarpophalangeal joints of the hand.

simply draws attention to a glaring problem: The people who can understand this will not be reading WP. The rest of them who will be reading WP can not understand it. The jargon must be simplified. A physician is nothing if not able to educate the patient, What ethical physician who can understand this would ever give this explanation to a patient who has turned a nice brownish red colour and can not seem to find energy to do much at all? Malangthon 19:04, 17 March, 2007 (EPT)

And it has no source cited. Malangthon 20:43, 17 March, 2007 (EPT)

I think the goal of wikipedia is to undo ignorance. Readers who don't know what words like arthroplasty mean can look them up with linked text (cross-references). What makes WP so powerful, IMHO, is the ability to crossreference everything. Wasn't that the whole point of hypertext originally? There's no excuse for not knowing what a word means any more, when you don't even have to pull out a dictionary. Just click on the word you don't know. How hard is that to do? I would have been besides myself if I could have done that in school!
Of course you would never talk like this to a patient. At the same time, there are laypeople who know what these words mean--have you ever listened to NPR? I think we shouldn't be obligated to use five words when one will do, as long as someone can link to the definition easily enough. I agree that we should make sure each big word is at least linked to another page, if not explained on the original page.--Dr.michael.benjamin 03:58, 31 May 2007 (UTC)

[edit] External Sources

FYI: The link to bioiron International Bioiron Society is members only. Malangthon 20:43, 17 March, 2007 (EPT)

[edit] Screening

This section was a bit sparse and had no sources. I did a rewrite of this section employing authoritative sources. Malangthon 09:16, 18 March, 2007 (EPT)

[edit] Histopathology

This section was a bit cryptic so I did a rewrite expanding its coverage and using authoritative sources. Malangthon 09:16, 18 March, 2007 (EPT)

[edit] Discussion reorganisation

Hope I am not being too intrusive but as I read this it became clear that it was rather more organic than is helpful in following the discussion. I have not deleted anything but have simply rearranged the topics under their related categories. My apologies if I have stepped on toes, but prehaps the discussion should be, like the article, a bit more organised. Malangthon 09:31, 18 March, 2007 (EPT)


[edit] Article overview - WP guidelines, quality and language

Intro – one para. Too brief for an article of this length possibly.

History – one para. Too brief?

S & S – I say it is fine, could use a little more elaboration but the sources are good (Although Jfdwolff has disagreed but see our discussion under "Sources").

Diagnosis – intro para plus

  • Imaging feature – No sources. It could be interesting and informative if this were developed more. One problem is that the language is very jargonish. Providing a simplified version for the technical terminology would help John Q Public to better understand this. I had a few friends look at this and they could not make heads nor tails of it – not what WP is shooting for. I have spent some time in imaging technology to have an idea what it is trying to get across but it is technically dense.
  • Chemistry – 4 para. Not really the best title, could be “Lab tests” as in the “Chemistry of lab tests” or “Clinical Lab Testing” (a common and traditional, though formal appellation) or “Lab work-up” (colloquial but common language). The first two tests are covered fairly well without danger of the reader’s eye glazing over and have definitive authoritative sources. The other tests could be elaborated somewhat and related to the overall topic since these concerns do show up in long-term effects (see “Complications” and “Screening” for example).
  • Histopathology – 1 para. Historically and clinically this section is pertinent. I have elaborated on it from the original text with good and authoritative sources, which can be accessed for greater detail by pedestrian and physician alike.
  • Screening – 3 para (counting the bullet points) Hits the main points, uses authoritative sources and is succinct, in my humble opinion anyway. I elaborated on “genetic screening” since it is an important part of this article and given the situation, important information to know.
  • Differential diagnosis – 3 para. This is, in my opinion, an important part of the article. I think it hits the high points but needs elaboration and sources

Summary: May I suggest raising the formatting one level for each of these (i.e. remove one = from each side) to allow for elaboration down the line given the complexity of these issues or simply to note their strategic position in the article.

Epidemiology – 1 para. Intro is undersourced in my opinion.

Genetics – While this is well resourced, we could use more accessible sources as well. (The technical nature of the language of the sources placed it well outside the reach of the common reader.) I have provided an intro to accomplish this (and tested it on readers). A further note, given that epidemiology is basically the study of patterns, sources, and causes of disease, this seems to me to be a subcategory of epidemiology. We could achieve this by raising the level of Epidemiology or lowering that of Genetics. I prefer the former.

Pathophysiology – 3 para including 2 subsections. Begins well. I am not sure it has been fully sourced. I have not read the one citation in the introduction as yet.

  • Crypt cell hypothesis – Crypt cell is cryptic to say the least. No sources and in need of help with the technical jargon.
  • Hepcidin-ferroportin axis – same problem as crypt cell hypothesis. Neither demonstrably achieve many of the WP goals.

Complications – I wrote this missing section with an authoritative source. I was surprised it was not there. It hits the clinical high points. I had it test read and it is OK. As more information becomes available, it will grow surely.

Treatment – this was unsourced so I provided a definitive source. Malangthon 10:17, 18 March, 2007 (EPT)

[edit] Sources

I'm again concerned about Malangthon's use of secondary sources. I warmly applaud the expansion of the page, but the use of secondary sources is against a long-term consensus well established across medical pages. I really don't care if the Mayo Clinic's pages are suspect or not. In fact, they may well be jolly good. I wouldn't mind learning some gastroenterology at Mayo!

But our readers deserve the right sources. For an encyclopedia, a real reliable source is a peer-reviewed journal article. I will raise this point at WP:CLINMED, and see if anybody else has views on this. JFW | T@lk 22:41, 18 March 2007 (UTC)

My 2 cents - primary sources (peer-reviewed journal articles) should be leaned on for the bulk of references, in keeping with most medical articles. However, if interpretation (beyond that provided in the journal article's discussion section) is required, a secondary source is generally needed to provide that interpretation (i.e. we should quote the studies, but shouldn't be in the business of parsing what a study "means"). MastCell Talk 23:26, 18 March 2007 (UTC)

[edit] Irish, British Isles Descent

The Irish, Welsh, Scots, and Brits are generally affected more by Hemochromatosis than other ethnic groups, but I wasn't sure how to put this, so I mentioned Northern European and Hiberno-English as the two most accurate descriptors. Also, it is noteworthy that the statistic of 1 in every 300-400 people are effected by the disease is because pre-menopausal women are generally not effected the disease, and post-menopausal women generally do not suffer the same effects because of changes in diet, lifestyle, and so on, of men. —The preceding unsigned comment was added by Michael brazell (talk • contribs) 18:31, August 23, 2007 (UTC).

"especially people of Irish, Scottish, Welsh and English descent."

Surely it would be more concise just to say "British" here? Irish, Scottish, Welsh and English together make up the British Isles. WikiReaderer 11:21, 28 August 2007 (UTC)

[edit] Cleanup sources

After Malangthon's edits in March, the article has not been cleaned up. My concern it the enormous reliance on website material while there are excellent peer-reviewed studies available, e.g. last year's review by Pietrangelo in NEJM. JFW | T@lk 06:41, 14 January 2008 (UTC)

HFE-related disease in homozygotes (liver and joint) in 28% of males, much less in females. This needs to be cited. JFW | T@lk 14:15, 17 January 2008 (UTC)

[edit] Screening

Using a ferritin of 1000 as a cutoff: doi:10.1182/blood-2007-07-102673 JFW | T@lk 00:41, 25 March 2008 (UTC)

[edit] punctuation

Under "Signs and symptoms"

Liver cirrhosis (with an increased risk of hepatocellular carcinoma Liver disease is always preceded by evidence of liver dysfunction including elevated serum enzymes specific to the liver.

there is a left parenthesis with no right one. I'm not sure where the right one should go. Also, I get the idea that there ought to be punctuation between "carcinoma" and "Liver" (maybe because "liver" got capitalized). Sorry I couldn't fix it. anon 01:22, 24 April 2008 (UTC)

[edit] "treatment" paragraph

Some of the content of this section needs qualifying. eg "treatment includes". I'm only a patient not a doctor, but this position allows me to know consensus is far from reached in terms of what restrictions are required in diet eg one consultant bans red meat, the next (in the same dept) say oh thats nonsense. Detail specifying WHY patients might drink less alcohol and more tea would be helpful to those readers who have looked up this article two days after being diagnosed. Almost-instinct 23:30, 14 May 2008 (UTC)