Talk:Lupus/Archive 1
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Archive 1 | Archive 2 |
lupus
Lupus is a bit mysterious, perhaps due to its scant presence in the population. Therefore, clear answers are hard to find. I have a question, how often do the effects become fatal for those with Lupus?
The part discussing porphyrias probably needs to be merged into the porphyrias article. It is discussed too deeply for an article on SLE.
- Uh... this page requires a lot of attention (e.g. the fourteen diagnostic criteria), and epidemiology will be part of it when I finally lay my hands on this. As far as I know, there are few longitudinal studies that follow-up Lupus patients and their causes of death. Nevertheless, they suffer from accellerated atherosclerosis, especially when having positive antiphospholipid antibody, and they can develop a nastry nephritis (lupus nephritis). Furthermore, Lupus patients are at risk for infections when being treated with immunosuppressant drugs... Most will die of their Lupus rather than with it. JFW | T@lk 11:14, 22 Aug 2004 (UTC)
I am new to this website - recently diagnosed w/ lupus - can anyone recommend a good website/chat room for information? Thank you.
Name
Surely the page name should be Systemic Lupus Erythematosus rather than just Lupus Erythematosus, especially as the first line of the article also calls it Systemic Lupus Erythematosus as this is the correct medical name. —Preceding unsigned comment added by 82.36.124.236 (talk) 18:46, 9 December 2007 (UTC)
Anti-DNA?
Looking forward to your getting your hands on it, certainly! But in the meantime, I wonder if the whole reacting against DNA thing is quite true? (I'm not trying to imply it isn't, I don't know, that's why I'm asking). Lupus is characterised by antinuclear antibodies, but are they actually anti-DNA? I was just wondering if they might not be anti-another bit of the nucleus... histones or proteins specific to the nuclear envelope, for example? --Viki 23:24, 27 Aug 2004 (UTC)
I just found the answer in abzyme. I guess I should've looked there before. But I'm still keen to encourage wait-til-I-get-my-hands-on-it man to get his hands on it. Or I will (that's not a threat, by the way, I just want to see the article expanded). --Viki 23:29, 27 Aug 2004 (UTC)
There is both ANA and Anti-DNA that get measured. --Waterspyder 00:22, 12 October 2005 (UTC) just diagnosed -
Antinuclear antibodies constitute a large number of antibodies. In the assay to determine if a patient is ANA positive, stock cells are incubated with the patient's serum. Fluorescent antibodies are then added that will attach to the patient's antibodies, so that under a microscope one can see if the patient's antibodies are directed against the nucleus (ANA) or cytoplasm (ACNA) etc. Within the classification of antinuclear antibodies are anti-dsDNA, anti-Ro/SSA, anti-La/SSB, anti-scl70 antibodies, etc. --anonymous, American MD, 14:45, 1 July 2007
Big rejig
Okay, done the threatened giant edit, but it could still probably do with something on the history of the disease and progression of clinical symptoms. Also, I'm just a student, so any real doctors/immunologists, go wild with the corrections!
--Viki 17:49, 20 Sep 2004 (UTC)
Update
I am altering some of the historical information since there are several different stories as to why it is called Lupus. I am also updating some of the drug information since quinines are still used in almost all Lupus patients (barring extreme side effects). Corticosteroids have some seriously negative effects and therefore many doctors are reluctant to prescribe them in the longterm due to these side effects, which include immunosuppression. --Waterspyder 00:23, 12 October 2005 (UTC)
- Don't put too much in the intro, please. JFW | T@lk 03:12, 14 October 2005 (UTC)
What is acceptable for the intro then? I think that the statistics on number of people it affects is important. I think I would altogether like to see the part on the name removed since there are so many different interpretations and no one is really sure. Why are we favouring one over the other?
Additionally, the information on epidemiology was removed as was information on medication. Is there any particular reason for this? I read the instructions and I'm not sure what I'm doing wrong in this particular instance.
--Waterspyder 00:27, 16 October 2005 (UTC)
- The number of people affected is not really useful. The proportion (e.g. 1 in 1000) is more to the point; ideally, incidence and prevalence ought to be menioned.
- The favoured explanation is the one that has the most currency. JFW | T@lk 04:57, 16 October 2005 (UTC)
- You also left a comment on my talk page. Let's discuss everything here. The intro is supposed to be telegram-style, and as long as things can be discussed briefly there is no reason why medication or epidemiology can't be alluded to. JFW | T@lk 06:48, 16 October 2005 (UTC)
I apologize that I am a little new at this, so I am getting used to the mechanisms of communication. I checked the page today and I presume it was you that made some alterations to it, and it definitely works a lot better in my mind. I fixed some punctuation, but that was it. The Causes under Pathophysiology is the only other section that needs major changing since there are presently thought to be three causes of Lupus. The first one is genetic, and is either the result of a spot mutation or it is hereditary and in the second case can be passed on to children. The second type is attributed to viral or bacterial infection. There is no documented proof, but many doctors suspect this is the case and suspect Staphylococcus and Streptococcus infections to be a chief culprit. The final type is Drug-induced Lupus. Currently the article indicates that medication exacerbates lupus symptoms, and while this is true, Drug-induced lupus is where medication actually causes a physiological mimicry of lupus that is treated in the same way as the first two forms, but usually once the medication is stopped, all symptoms of lupus also cease and many patients never again present with lupus. It's like fake lupus. Sunlight, stress and medication can all exarcerbate symptoms of all three. Finally, and I'm not sure where this should be mentioned, but under Diagnosis, there is a mention of an effect on electrolytes, but what is actually occurring is that there is an increase in the electrolyte sedimentation rate (ESR). Anyhow, that's pretty well it, I would be happy to fix the article in these remaining areas, but I guess I want to run it by you first? Thanks! --Waterspyder 15:18, 16 October 2005 (UTC)
Additional information obtained from [1], [2], [3]. There is a ton more information that needs to be worked into the page and restructured, but I'm not up to the challenge right now. --Waterspyder 00:26, 17 October 2005 (UTC)
- The three causes can be mentioned in an "etiology" section. Perhaps quoting a recent review is the best thing we can do. I'm not sure about the "spot mutations", as lupus is not known to be monogenic.
- Drug-induced lupus should be mentioned in passing, but could well have its own article, as it is a distinct disease entity with distict serology (anti-histone antibodies) and a distinct cause (e.g. hydralazine, antithyroid medication).
- We should avoid web references as sources; these are typically aggregations of articles in medical journals, and in that case the journal is the primary source. JFW | T@lk 02:21, 17 October 2005 (UTC)
You are correct, Lupus is the result of numerous genes, and is usually pretty dependent on parental contributions, but sometimes spot mutations do play a role according to some research (I would have to go hunting again). Basically it is not responsible for the entire cause of the disease ina person, but was thought to play a contributing role. Given I did read this 3 or 4 years ago, so it's also entirely possible that new research is debunking old research. I'm sure in 5 or 10 years reasearch on genetics will be much clearer in this field. I didn't add the web sources to the page itself for the very reason that while some of these are great FAQ articles, you can access them by going to places like lupus.org. I agree, Drug-induced lupus could easily have its own page, I just don't know quite as much about it. In the meantime, I think I am done for now on this page. Thank you for putting up with me. --Waterspyder 18:24, 17 October 2005 (UTC)
-Hi, don't know where to find or verify this, but I have heard/read that the term lupus is related to the belief that sufferers had lycanthropy- that is, people used to believe people with lupus were "werewolves". It has something to do with the skin rash and light sensitivity. Sorry I don't know more, but it might be something to look into...—Preceding unsigned comment added by 68.35.4.7 (talk • contribs)
- What I had actually read was that "Lupus" was used because the malar rashes sometimes looked like somoene who had been attacked by a wolf. I have also read another story which attributed "Lupus" to the French word "Loupe"; the mask that women wore on formal occasions and served to conceal the malar rash. --Waterspyder 14:04, 16 July 2006 (UTC)
The update I have read is still missing or mistakes three critical areas in the introduction alone.
Firstly, the introduction doesn't begin with the correct definition of lupus. It is an autoimmune rheumatological disease. This is why it falls under rheumatology and patients see a rheumatologist. I feel it is extremely important to add this to the into as well as further on in the article.
Secondly, the intro states that Plaquenil is the only antimalarial drug used to treat lupus. That's true; but the reason it is used is that it is a drug used to treat rheumatoid diseases, including rheumatoid arthritis (RA).
Thirdly, the intro and article do not clearly state that the parts of the body affected can indeed all be classified: it affects the connective tissues of the body. This includes literally everything except hair, nails, and bones (blood and skin are included, as are muscles, tendons, organs, etc.). It's much more clear to readers when it's spelled out this way, rather than trying to list all body parts that are affected by lupus and only giving a partial list--especially in the introduction. Believe me, I've tried when writing about lupus elsewhere!
I could edit the article, but am hesitant to until we discuss these corrections and suggestions, please.
--(author, The First Year: Lupus) --Editrx 23:22, 10 September 2006 (UTC)
Prognosis
I was confused by the statement "...fewer than five years. Advances in diagnosis and treatment have improved survival to the point where over 90% of patients now survive for more than ten years..."
Sounds like we used to die after 5 years, but now we die after 10 years or so!
Would it be better to expand this by adding something like: "longitudinal studies over a 10 year period show that more than 90% of patients do not die during the 10 year study, and, in general, the majority of people can hope to live a normal life-span" Ref: http://www.lupus.org/education/faq.html#4
- Well, prognosis has improved with better treatment. The article says exactly that. If you have a reference for the study you cite, could you work that into this article? JFW | T@lk 23:46, 21 November 2005 (UTC)
- The stat I was given when I was first diagnosed was 15% die within the first 10 years. My high school Biology teacher however told me that 90% of people die with Lupus, not from Lupus. I'm far more disturbed however by the difficulties associated with pregnancy. I should probably work on a section for Lupus and Pregnancy, there are some *serious* challenges (Lupus and Pregnancy from Lupus.org --Waterspyder 14:28, 16 July 2006 (UTC)
- If you'd like, you can reference the chapter on lupus and pregnancy from the previous edition of my book (pp. 206-210), which I believe is online at Amazon and Google Print (The First Year: Lupus). No, I'm not trying to sell copies; it's going into a new edition anyway (which I have to get cracking on). But it may save you some time and provide pointers to primary resources you may not have read. Or, let me know if you'd like me to write up a section for the article here. --Editrx 23:30, 10 September 2006 (UTC)
Having read up on Lupus in the last few days, this prognosis does sound a bit more dire than necessary. I don't know enough to offer any specific edits but agree with the comment above about clarifying that 10 years in not the expected maximum life span for 90% of lupus sufferers. We non-medical readers of such articles need clear, accurate info on diseases we or our loved ones suffer from, not information that scares the heck out of us as this prognosis did when I first read it. —Preceding unsigned comment added by 210.48.101.106 (talk) 21:31, 29 October 2007 (UTC)
I totally agree, I am awaiting diagnosis, didn't know anything about it, looked at this and promptly burst into tears. Then looking at lupusuk.com and the NHS web site it appears that the above prognosis is pretty much rubbish. Hopefully this will get changed very soon... —Preceding unsigned comment added by 90.196.151.234 (talk) 15:30, 30 October 2007 (UTC)
nutrition
There's currently no references to other, natural, treatments. This is one book I have read, with lots of good references to back it up, but no doubt there's other too. [4]
Image needed
Anyone have a free photo of a lupus sufferer? —Keenan Pepper 05:34, 12 December 2005 (UTC)
- try to find some free foto of Seal_(musician). he's got lupus. 84.129.157.24 (talk · contribs)
That is incorrect. Seal had lupus vulgaris (cutaneous tuberculosis). The malar rash of SLE does not cause scarrring. JFW | T@lk 19:08, 7 February 2006 (UTC)
Image up on the malar rash article. Salanth 12:15, 8 July 2006 (UTC)
JFW, the malar rash of SLE can cause scarring - see www.postgradmed.com/issues/2003/11_03/dallera.htm among others, which states: "The discoid lesions seen in SLE are raised, erythematous plaques with adherent scale and occur most commonly on the face, scalp, and neck. Over time, these lesions lead to changes in skin pigmentation and scarring."
I would note that "commonly" should be edited to "often." The malar rash is not seen in a majority of lupus patients, and never in ones who don't manifest discoid lupus -- which is another section altogether: the problem of lupus patients "not looking sick." I hesitate to edit the caption without a discussion of that, however. Maybe I'm just too shy about it. (--author, The First Year: Lupus) --Editrx 23:34, 10 September 2006 (UTC)
Seal
On the wikipedia Seal site it says that Seal had lupus - just lupus. And he doesnt seem to be dying (thank God) so what is the line about lupus being 'chronic'? (First line of the article)?
There are several versions of lupus. Drug-induced, cutaenous (skin-related) and systematic. Drug-induced usually occurs in cancer patients receiving treatments (I think). Seal has the skin related one, which may or may not develop into systematic. The last one is a chronic disease that takes an unpredictable variable course. Meaning a lupus flare could last anywhere from 6-months to 6 years then go into remission only to return within 6 months, 2 years or 5 years. Totally unpredictable. (sorry new to this wiki, perhaps I should RTFM) ~ rabbitinpumpkin (05/12/06)
Askmen.com has a blurb about Seal's scars being from discoid lupus. http://www.askmen.com/toys/interview_100/102_seal_interview.html Hm...looks like there's no separate article for discoid lupus - it just links back here to SLE. Salanth 12:22, 8 July 2006 (UTC)
the great imitator
I re-added the line "it is often mistaken for other illnesses because the symptoms come and go unpredictably" Sp that it reads... "SLE is known as "the great imitator". Its symptoms vary so widely it is often mistaken for other illnesses because the symptoms come and go unpredictably". As any of us that deal and have dealt with SLE (my daughter died from this dread disease a couple of years ago) I not only think it pertinent but an absolute to have remain in the article. As with SLE, we know this is one of the main reasons it is so hard to diagnose due to the symptoms coming and going. When doing any kind of research, knowing such information is not only valuable, but also nessary to understanding this illness and the range of possibilities that are often overlooked due to this very fact.--Mystar 15:24, 9 October 2006 (UTC)
Mystar: There are now both reasons for lupus being called the great imitator - there are references for both, so it makes sense that both are in the article. What is your reasoning for removing the reference to the multitude of symptoms? Now included are three references to why lupus is called the great imitator - it has many symptoms, it mimics other illnesses (because of the many symptoms) and the reference you included where it discusses the unpredictable coming-and-going of symptoms. WLU 20:34, 9 October 2006 (UTC)
Initially the problem was that you removed (I'll assume an oversight on your part here) an extremely important fact regarding this disease. Secondly, you added an unnecessary link, making a repeat of the link I places and the information contained therein. We do not need duplicate information/references. Thirdly, you mis-referanced the additional link you placed. The section you edited was talking about SLE being mistakenly diagnosed due to the mimicking of symptoms it displays. Every Lupus sufferer is soon aware of these facts. People needing AWARENESS need to see and understand this fact. You miss-linked an article about Lupus among African-American Women, which had nothing to do with the section at hand. While I applaud your wanting to add this to the page, the place you inserted it to was not the correct setting. I reformatted the page to include this very pertinent fact.
I suggest you please take time to read this section I reformatted very carefully. People count on information like this to assist them in their search for information and help. No matter what you think, I am acutely and intimately well versed in Lupus. Having done years worth of research and study. Please do not make this an edit war.--Mystar 04:03, 10 October 2006 (UTC)
The sentence I removed didn't make sense in the context. The sentence you replaced it with "SLE is known as "the great imitator", as it often mimics other illnesses because the symptoms come and go unpredictably" also didn't make sense in the context - illnesses are diagnosed through a coherent and specific set of symptoms. What makes it a great imitator is the variability of the symptoms, and also the variability across time supported by your reference. I added the link to support the statement of why it's called the great imitator. Your subsequent replacement reference included the sentence "SLE is known as "the great imitator", as it often mimics other illnesses and because they come and go unpredictably." which supports both points - it mimics other illnesses and its symptoms vary over time. Replacing the statement that it is misdiagnosed due to temporal changes alone is incorrect, it is both. Splitting the sentence "SLE is known as "the great imitator" because its symptoms vary so widely it is often mistaken for other illnesses> and because the symptoms come and go unpredictably" disconnects the idea of it being a great imitator from the reason why, which is why I kept it as a single sentence.
Your subsequent edits duplicated sections - you broke the introduction into sections on known treatment and diagnosis. Both these sections exist below. I reverted and applied the changes that you and others made to subsequent pages. Putting the reference from uuhsc.utah.edu/uuhsc didn't make sense, there is no need for a reference saying Lupus is the great imitator when the rest of the sentence and references discuss this. The references to people of colour and the brief article on lupus have the statements about why they are great imitators. Though the wrong diagnosis article does have statements about mimicing other illnesses the people of colour article contains the statement "With its numerous symptoms, lupus is often mistaken for other diseases, and has often been dubbed “the great imitator.” This article emphasizes the wide variety of symptoms, a reason why it is called "the great imitator".
- Thirdly, you mis-referanced the additional link you placed. The section you edited was talking about SLE being mistakenly diagnosed due to the mimicking of symptoms it displays. Every Lupus sufferer is soon aware of these facts.
The article is for the population at large, not for the Lupus sufferer. The link I added justified one reason why it's the great imitator. I don't see how it is mis-referenced.
- People needing AWARENESS need to see and understand this fact. You miss-linked an article about Lupus among African-American Women, which had nothing to do with the section at hand.
This isn't about awareness, it's about factual content. The article about lupus among AA women was relevant. As I stated above, it contains the sentence "With its numerous symptoms, lupus is often mistaken for other diseases, and has often been dubbed “the great imitator.", which seems to make it relevant. WLU 15:15, 10 October 2006 (UTC)
Mystar - I reverted because of the duplication of sections, the content is addressed above. WLU 16:17, 10 October 2006 (UTC)
- 1 it IS about awareness as well as Factual content, which I have correctly cited. With this type of Illness and the way it works, it is vital to include awareness. While the article is for the populace at large, it is also referenced in many Medical journals and is a very helpful resource tool and should include the pertinent info... As I have cited. You omitted the African-American link and mention, which is specific and needs to be cited as it is a unique aspect of this disease and as it attacks this people of color differently, having the nessary facts and citation is appropriate.
The article reads fins as I have edited it. The fact that you seem to think it confusing is not my problem. You have a disturbingly aggressive history of reverting edits that are not yours. Please stop edit warring. Separating the sections as I did actually makes the page read better and is easier to follow. Again I ask that you stop edit warring simply due to your distaste for me.--Mystar 16:27, 10 October 2006 (UTC)
I feel it's necessary to point out (I haven't edited the article, though it's bothered me a few times upon reading it) that lupus is not "the great imitator" per medical circles. Multiple sclerosis is "the great imitator." It would be far more accurate to state that lupus is "one of the great imitators." I've run into this misperception before in nonacademic works, but per medical journals, medical books, etc., labeling MS as "the great imitator" is endemic. As this may be a personal issue (per the last few notes I've seen, above), I have not edited "your" article here. If I can be of help, please just let me know; I'm doing the research right now to update the second edition of a book on lupus. --Editrx 18:41, 15 October 2006 (UTC)
I've got no problem with you changing it, a reference would be excellent. How about a sentence like "Along with multiple sclerosis/other diseases such as MS, lupus is a great imitator of other medical conditions"? I don't know enough about lupus to contribute much beyond the initial correction. WLU 21:09, 15 October 2006 (UTC)
porphyria?
What is the porphyria stuff doing in the middle of this? Cutaneous lupus needs its own section, I think. Subacute cutaneous lupus and discoid lupus should be delineated. --Caroldermoid (talk • contribs) 20:55, 19 November 2006 (UTC)
- I agree with you, and this section doesn't cite ANY references. I have been living with SLE for years and have done research continually over the past few years, and I've NEVER seen any references or heard of people commonly misdiagnosed with SLE instead of porphyria. Just because it may apply in a particular case doesn't mean that this commonly happens! I think either references need to be stated, or this entire section should be removed. In fact, I've heard of other diagnoses that were common, like Fibromyalgia, then later diagnosed with SLE, but NEVER porphyria.ChÿnaDragön 03:09, 21 May 2007 (UTC)
House
To clear up some confusion, I think part of the reason people (at least myself and one other person) keep putting House in is because the season 2 DVD has a special features segment that features every time Lupus is mentioned in the season (because it's a show about strange diagnoses, Lupus comes up a lot 'cause it's got such diverse symptoms). As far as I know it's never actually been a final diagnosis on the show, it just comes up a lot as a possibility. I'm quite willing to concede that it may not be noteworthy enough to include, but I'll throw in one of those invisible comments underneath the 'noteworthy people' section and hopefully head off any future contributors. WLU 23:36, 23 November 2006 (UTC)
Seconded it's inclusion. I have begun to see the phrase, "It's not lupus" pop up on websites, and I think that this is at least notable enough to get it included in the article. -Chris
I wasn't voting for the inclusion. To the contrary, I think it should be kept out, unless we can put in something more than "Lupus pops up a lot on House". The WP:MOS for medical articles does have a section called 'cultural references', which would include House and the famous patients, but it'd be nice to have something more than that; also, WP:AVTRIV. How would people feel about splitting trivia up into appropriate sections? House could go into symptoms for instance. Anyone know why George from Seinfeld keeps thinking he has lupus? That might be a useful tidbit for somewhere. WLU 20:33, 29 November 2006 (UTC)
In a recent episode of House this was said, highlighting the fact that Lupus is offered up so much in House and Seinfeld (by George). Perhaps a Trivia section?
- Dr. Foreman: You hide drugs in a lupus textbook?
- Dr. House: It's never lupus.
I cracked and added house to the article. The WP manual of style calls for minimal inclusions referring to pop culture, but it does say if included, do so either in a section on the societal aspects, or preferrably in a section that links to the specific social manifestation of the illness. I put house in the symptoms section, it's only one sentence, and hopefully it'll cut down on the number of people trying to put house into the article willy-nilly. (see WP:MOS medicin-related, trivia).
Also, I added other diseases that pop up as 'great imitators', MS, Lyme disease and Fibromyalgia.WLU 04:28, 17 December 2006 (UTC)
- I went ahead and removed the House reference. Personally, I got a bit upset when I saw this. It doesn't sound encyclopedic in the least, but worse, it trivialises the disease. This line:
seems to say, "One of the most important aspects of lupus is it's occasional mentioning on a TV show". Add a link in the House article instead. Hotdogger 15:11, 1 February 2007 (UTC)It is for the unpredictable and broad list of potential symptoms that Lupus is mentioned frequently as a possible diagnosis in the TV medical drama House.
- Sure. The only thing is now there's probably going to be putting inn reference to House elsewhere in the article, while having it there seemed to head it off. As I said above, MOS says integrating it into the article proper if possible, which was why I put it there. If you can find a place you think is more suitable, cool. I just believe having it there meant not having IP users adding "It's not Lupus" to the intro paragraph. Can yo think of a better place, or do you just want it out completely? WLU 15:17, 1 February 2007 (UTC)
- Preventing others from putting something in the article hardly justifies this section. If anon users put "It's not lupus" in the article at random, as you say, that's vandalism and should'nt be tolerated. If the article should mention House at all, it should be at the very bottom, maybe in the form of a link to the House article. Hotdogger 17:15, 1 February 2007 (UTC)
- It just popped up in the first paragraph and I deleted it because I'd never watched House and didn't get the reference, but it seems to fall under this definition. It might be good to put it at the bottom, in the usual "References to lupus in pop culture" format perhaps? octopod 20:26, 20 April 2008 (UTC)
- Sure, but there is precendent for including it in the article, preferrably embedded in the text. I thought symptoms was the best place for it, hence putting it there. If you want to put it at the bottom, I've got no issues with that. That was where I thought it should go initially, but its inclusion was contested. WLU 17:55, 1 February 2007 (UTC)
- I'm not sure if it's common protocol or even Wiki standards, but many other illnesses cite people who have the illness, as well as its being mentioned in media. If the show should be mentioned, it should be in a "media" type section. I love the show personally, but I don't think it has any place in "Symptoms" or other places in the article as it is currently written. ChÿnaDragön 03:13, 21 May 2007 (UTC)
- It is, however, a relatively rare disease which many people wouldn't have heard of prior to the House joke. I suspect that many people who read this article would only do so having heard of the disease on the TV show. I think it at least merits a mention and a link back to House. --J.StuartClarke 16:19, 13 November 2007 (UTC)
Recent changes
I made a buch of big changes today, here's a diff-by-diff list of rationales:
This is the first one. I'm just altering some simple wording because I think it flows better.
This one I replaced a sentence I removed in my previous edit in a different section. I'm not sure if it belongs in this section, or if it's true or not, but this way the information isn't lost.
This one I re-worked for flow, added the wikilink for collagen and changed the external link to a reference.
Here I'm just putting in the line about House in case anyone in the future thinks about putting the info back in.
(Diff) I didn't know what the Type III thing meant so I dug up a reference.
The sentence wasn't grammatical, added a 'disease' to make it so.
This one is obviously the biggest change. I'll go through section by section.
In the intro, I replaced "Joint (rheumetological)" with just joint, 'cause I didn't know why it was like that, and joints are just joints, there's no disambiguation for rheumatism. I added the brief line about treatment (steroids and suppresants), changed brain/nervous system to just NS#vertebrates as the NS page has links to CNS and PNS - if it attacks only one or the other, it'd be great if someone could clarify it. I also included the single line about the name. The line about the name could probably be taken out or re-worked, I'm not too sure about it.
I re-worked the order of the sections and consolidated a bunch of duplication. History seems to come first, though arguably diagnosis, symptoms or something else could go here. History seems to come first just 'cause it's history. I didn't change anything within that section. The SLE research section I rolled into the research section below.
Signs and symptoms I put next, followed by diagnostic criteria, then etiology. Signs and symptoms would seem to proceed diagnostic criteria, but I could also see diagnostics coming later because it would give definitive diagnostics, followed by the much more general or varied symptoms.
Etiology I put next - once diagnosed, the disease woudld progress, so it seemed logical. I moved the line about reseach and the human genome into the research section. I also re-formatted the description of the "wrong diagnosis" link. I left most of the rest of the section alone I believe.
The Datamonitor reference I actually found on the web and put in as a reference. I also converted it from that long quote to a brief summary that captures the essence of change that could be occurring in treatment in the near future. I also put in the bit about the human genome. I think I also linked several orphan sentences into a paragraph.
Last on this diff, I changed it from "notes" to "footnotes", 'cause they are footnotes.
Here I put in some wikilinks and formatted weblinks into footnotes.
Here I altered the type II and III links and first two sentences to read better. I added info and a link about the LE cell test in the history section, added spaces in all of the signs and symptoms bullets (which I now realize is irrelevant) and put in the citation needed tag (later removed).
This one I just took out a sentence I made obsolete in my last edit.
Here I moved a section down to after the mnemonic, since SOAPBRAINMD seemed to apply only to the ACR symptoms.
Here I altered one of the references descriptions 'cause before it just said "American-American women", Lupus and African-American women seemed to make more sense given the actual reference. I also changed 'causes' to 'triggers' (just seemed to make more sense, but if the semantics don't match up then someone else can change it), genesis became creation, seems less biblical, and put in a wikilink.
Here I made the sentence a bit more grammatical (and mis-spelt though). I'll correct it and take out the 'appears' in the sentence on AAW.
Here I replaced the citation needed tag with the full references included in the references section, but embedded in the text itself.
Here I just fixed the formating I muffed up.
Here is another set of big changes. I read through the whole article and moved a bunch of stuff around in to more appropriate sections, and put in a reference.
I added kidneys to the intro since there seems to be significant involvement of the kidneys in lupus (it's mentioned several times in the text).
I added the section I took out of porphyria on medical historians and folklore/vampires/werewolves. I don't actually know how much lupus and porphyria overlap, so if anyone is more knowledgeable and they are welcome to edit those sections. I also re-worked the mention of the LE cell in history, but moved the reference and explanation of the LE test to a different section.
I moved the 'rarer manifestations' up, it seems to make sense there. I also removed the indent on other abnormalities in my next edit.
The LE test is now in the diagnosis section.
I re-worked a sentence in the diagnostic criteria section, the one about inclusion in clinical trials. Makes more sense to me now.
Epidemiology seems to make more sense to me right after diagnosis, though it might also make sense closer to the beginning.
In etiology, I put drug-induced SLE into its own category, and moved the non-SLE forms into its own bullet, adding a tag about the canine discoid lupus so people don't put in wikilinks unless someone creates a discoid entry for humans. Prognosis seems to make more sense in the etiology section, since etiology is how the disease progresses and prognosis is how long people can expect to live.
Porphyria appears to have a link to lupus, but looks like someone who knew a bunch of stuff about Porphyria just threw it in the lupus article. It needs to be worked over by someone who knows more about Porphyria and SLE than I do. I also integrated orphan sentences into a paragraph.
I put in the section on pathophysiology 'cause it seemed warranted, and introduces the apoptosis section a little better. I also tracked down an apoptosis references, as the "Apoptosis and autoimmunity" one doesn't seem to be published yet... I also fixed the orphans up into a proper paragraph.
Treatment I tried to clarify a bit.
Research I broke into research and a sub-heading of treatment research - the information seems to warrant separate sections.
The references I took out 'cause they're already in the body of the text.
A lot of the changes came from giving the entire article a read-through - this way seems to flow better, each section links more to the section before an after in my opinion, there's less duplication, better references for a bunch of entries, an it doesn't look quite so much like people have been coming in, adding a sentence or two, then leaving without bothering to integrate it into the rest of the article. Is there anyone who can work on the Porphyria/SLE section? I don't know enough to do so.
Thoughts? I think it flows better and the order makes sense, plus there is no duplication of sections and all the information is still there. WLU 02:09, 24 November 2006 (UTC)
Just made more changes, the biggest ones being trying to fit the article to the WP:MOS for medical articles - I moved stuff around, added sections (mostly classification) and tucked sections which didn't make sense into ones organized by the MOS. I also removed a whole bunch of the external links (which are supposed to be kept to a minimum according to the MOS), leaving in basically one for the US, UK and NZ, as well as Lupus international. I also removed a supprt group external link for the UK - just having one country's support group is too 'that-country-centric', but put in one from lupus.org (which is American) that has links to support groups in many different countries.
Mystar - your edit replaced autoimmunity with autoimmune in the wikilink section, which landed it on a re-direct. I changed it back so now it goes right to Autoimmunity, then went through the whole article and similarly corrected all the wikilinks so they go directly to the appropriate article rather than bouncing off of a re-directs.
Thoughts? WLU 16:58, 28 November 2006 (UTC)
- Wow! Great job with the whole reorganization thing! Porphyria still needs to go, but I will work on that when I have time to figure out what else is on wiki on the topic. My next contribution will be to add material on lupus in animals. Caroldermoid (talk • contribs) 16:55, 28 November 2006 (UTC)
- Thanks for the praise, it's always nice to be appreciated. Especially when I'm so humble. WLU
Antiphospholipid Antibody Syndrome
Is there a reason that this is not mentioned on this Wikipedia page considering 50% of the Lupus patients also have this in addition to Lupus?? See the Lupus Foundation page and APS Foundation of America, Inc page for more information. eyz 18:18, 29 November 2006 (UTC)
There's already a couple of mentions of AAS in the article (first in Hematological manifestations under the main heading of signs and symptoms, then again under diagnosis twice. WLU
Thanks...must have missed it. FYI, the accepted international abbreviation is APS. eyz 01:16, 4 December 2006 (UTC)
Breast implant rupture and lupus
I removed a little on breast implant rupture and lupus. There certainly has been much discussion on whether breast implant rupture is associated with connective tissue disease. But there was a NEJM review of the relevant meta-analyses (PMID 10717013) and several other papers that concluded that the association was poor. As such, I've left the bit about elevated antibody titres and breast implants, but removed the recommendations on MRIs and the like, as they are better suited for the breast implant article -- Samir धर्म 10:05, 2 December 2006 (UTC)
- And the association of mesothelioma and asbestos are also poor, 10-15 years after exposure. Those are the types of studies we have, but nobody seems concerned about it. I give up, so whatever the "educated" medical doctors say. Jance 07:00, 4 December 2006 (UTC)
I appreciate your input, however I re-added some info on the subject. As this is an "informational" encyclopedic article, it is certainly pertinent to the person doing research to find this material. I think (from experience) that a person seeking not only info, but also recommendations from research is important. Not only important but in many cases life saving. Please try to understand that knowledge is the destination and the key. Omitting such knowledge is not helpful. Thanx Mystar 14:53, 2 December 2006 (UTC)
- This is the text in question:
- However there are no long-term studies (longer than 10 years) on women whose implants break. Because ruptures are usually "silent" (without symptoms), the US Food and Drug Administration (FDA) recommends that women follow-up after the first three years of implantation with Magnetic Resonance Imaging (MRI)s, and every two years thereafter. [1] In approving silicone implants, the FDA will require manufacturers to inform women that implants are not lifetime devices. [2]
- In the context of the lack of association between breast implant rupture and lupus, I don't see how the above text is relevant to the subject of lupus -- Samir धर्म 16:27, 2 December 2006 (UTC)
I can appreciate your being an internist, however being that you are of a medical profession, surely you can see the importance of information while doing research. Though the disputed information is perhaps on the fringe it is nevertheless information that is relevant and certainly encyclopedic. If you wish to re-word, add to or correct the information, please do so. But to remove the whole paragraph is not appropriate when indeed there are references and uncertainties to this specific area of Breast implant. Simply because you in your learned state do not see the need for it, we who are much less educated in the medical profession perhaps need such information to help our lack of knowledge. By simply deleting such creditable information is not appropriate. Mystar 17:59, 2 December 2006 (UTC)
- The information is correct and referenced, but not of relevance to the article on lupus. I've asked for comment at WP:CLINMED -- Samir धर्म 18:19, 2 December 2006 (UTC)
This paragraph has nothing common with Lupus. If you think that this kind of information would be needed in this article, then we should insert the paragraph nearly into every disease-related article. Even the first sentence of that part is not referenced ("Some researchers have found that women with silicone gel-filled breast implants have produced antibodies to their own collagen, but it is not known how often these antibodies occur in the general population and there are no data that show these antibodies cause connective tissue diseases such as lupus.") and these other sentences should be removed. Now, I remove it, please don't revert until we reach consensus here. Thank you for your appreciation. NCurse work 18:30, 2 December 2006 (UTC)
If there is enough concern on the subject to do a meta-analysis on it, then I'd say it warrants inclusion (the current sentence seems about right), maybe change the 'connective tissue diseases' to lupus itself since it is an article about lupus and not CTD. I'd say that if science can't find a link, it's not really encyclopaedic, it's just hearsay. I'd definitely put in a reference to the meta-analysis though, and can anyone find a credible reference discussing possible/theoretical links between SBI and lupus, just to reference "some researchers have found"? That'd allow people to look up further evidence on their own if they wanted to. However, not knowing enough about the causes of lupus, if we put in every single possible or considered cause of lupus, I'm guessing it'd make the environment sub-heading way too long. Just my opinion. WLU 22:15, 2 December 2006 (UTC)
- Sure there's been meta-analyses on CTD and silicone breast implants, and yes that should be mentioned. But FDA suggestions on silicone implant ruptures and MRIs are outside the realm of lupus and are tangential to this article -- Samir धर्म 15:20, 3 December 2006 (UTC)
- The new "labeling" required by FDA for silicone gel breast implants (as of Nov 2006) specifies that safety and effectiveness has not been established for lupus and other autoimmune diseases ( see http://www.fda.gov/cdrh/pdf2/P020056d.pdf on page 11). (By the way, the old labeling is almost identical on this issue, and this label is identical for all silicone implant manufacturers). The reason it is not established is that women with autoimmune diseases were intentionally excluded from the studies because there were concerns about safety.
I agree that this point is too peripheral for the lupus article, but probably belongs in the breast implant article. Drzuckerman 21:35, 3 December 2006 (UTC)
I just did a bit of research on google, very simple but should be comprehensive (lupus erythematosus silicone breast implant), and everything I turned up said that there was not enough evidence to rule out a link, but none said anything about a specific relationship between lupus alone and SBI - the only ones that showed up a maybe were anecdotal. Given that it is much harder to prove there is not a link than it is to prove that there is, it looks like scientific consensus is basically 'could be, but we doubt it'. I'd think that some references for what is there now (i.e. some researchers have found, also links between other environmental triggers), and one reference for for lupus not being consistently linked to it (or CTD in general) is sufficient, in case people are tuning into the article because they have SBI and are worried about lupus. Maybe a line about how it's not definitive that there's not a link, but it's looking pretty much like a no. The breast implant article itself has a long summary of negative findings as well. So my vote is:
- very brief mention of possible connection, but no strong evidence for it (basically what's there).
- definitely no info re: MRI and follow-ups, that's for breast implants, not here.
WLU 22:40, 3 December 2006 (UTC)
Treatment
I find this new information highly suspect and unfounded. It should be removed. With out proper citation it is conjecture. Also past treatment notations are warrented. I'll allow it to stay for now to give WLU some time to not only back up his claim, but to also add a proper treatment information history Mystar 23:19, 2 December 2006 (UTC)
- What new information are you refering to? I was just about to say that we should remove the citation needed tag. I just put in a minor introductory sentence to the section - there is no cure, only treatment of symptoms, unless the article is wrong. The use of NSAIDS, DMARDs, anti-malarials and steroids are all for the treatment of symptoms, and nothing I have seen on lupus is a cure. Accordingly, the treatment of lupus is restricted to treatment of the symptoms, like allergies or a genetic condition. I really don't see what new information I put into the article, as the sentence I added is just a summary of the information below it on treatment to act as a brief introduction to the section no treatment. Unless you have some new type of treatment to add to the article, I don't think there's much that can be added. WLU 13:50, 3 December 2006 (UTC) Also, as I have repeatedly stated, I am a male, thanks Ron.
- I'm going to jump in here. Much of the information on treatment has been up for a while. I made some additions due to a pet peeve of mine that despite Lupus' reputation as a "Disease of 1000 faces" it's handled as if it is a uniform ailment. Most of my information comes from Rheumatologists and University Biology professors, and I will attest to the following facts. 1) SLE does not presently have a cure (except drug-induced by removing the drug responsible for the reaction); 2) All current approved therapies are palliative or suppressive in their nature. No treatments currently advertise to be cures; 3) No current drug therapies are universal to all patients. Each treatment is tailored spcifically to each patient based on sex, ethnicity, history, severity of illness, and dual diagnosis ailments (Raynauds, Fibromyaligia, Rheumatoid Arthritis, Sjogren's).
- I personally know NSAIDS, Cox-2 inhibitors, immunosuppressives, anti-malarials, corticosteroids are commonly used to treat the symptoms of Lupus. I don't know what a DMARD is all about, but that's not to say they aren't also used. When I added things in, I did cite my reference, and there is other information there. At present, I do not see anything off base with the medication area, except that it is incomplete, and could use a little editing for style. --Waterspyder 21:05, 4 December 2006 (UTC)
External Links per Country
What do people think about the country creep in external links? We've got Lupus UK, Lupus USA, and someone just added Lupus Australia. At what point do we start removing country site, or do we take them all off? The Australia one looks not so professional and more like a support group. US one has a section on research and the links, after a quick look, seem more useful internationally. Lupus UK I'm having trouble accessing. WLU 12:49, 30 January 2007 (UTC)
Many articles have various external links. Having several that point to a specific country is not a problem, but rather enhances the content and verifiability of material placed.Mystar 21:18, 14 February 2007 (UTC)
- Many articles having different external links doesn't necessarily make it OK, and doesn't address the concern that my original title of 'Country creep' expressed. If the US site is to be included, should the Australia, UK, New Zealand, Canada, South Africa, India, and any other country with English as a primary language and a strong research base for Lupus be included as well? The UK and New Zealand sites seemed to have significant research components, but they are gone. Currently I don't see what the lupus.org site adds that significantly improves the page that the others don't, particularly the lupus international site. I've brought it up at WP:EL if you'd like to see the discussion. WLU 21:55, 14 February 2007 (UTC)
Well lets "clarify" a few things here, the term "brutally culled" is excessive and a bit melodramatic. Removing external links that are poorly worded, poorly sourced with material and information is one thing, removing external links that have a high content of pertinent information, have the professional look as in ease of navigation and accessibility of information is unnecessary. While some external links are of less than helpful to some they "are" in fact helpful to others. As Wikipedia is the "go to" source for the up to date information seeker, and from all over the world I might add, allowing external links from other countries should never be a problem.
However the wholesale deletion of a qualified external source of information that has a high significant of helpful information, and is well sourced is unjust. Simply put, because a person may not like a link does not mean it is not note worthy. There is no policy against having several external links that provide information that are specifically pertinent to region or country. In fact having such external sources is a positive, not a negative. People who live in various regions and countries need information that speak to their specific region with helpful information they can resource and access for them.Mystar 22:54, 14 February 2007 (UTC)
Potential Link to Crohn's disease
Does anyone know of any articles or information out there about the link between Lupus and Crohn's? My Wifes GI Dr told us that the two were very similar in symptoms and hard to tell apart. This seems a little odd to me since Crohn's is just the intestines. --Napnet 20:06, 26 February 2007 (UTC)
- There are some similarities, but to suggest that they are "hard to tell apart" seems like an error. Crohn's leads to granulomatous transmural inflammation of the bowel, and has some distinct complications in other organs, such as arthritis, uveitis, erythema nodosum and pyoderma gangrenosum. Crohn's without bowel symptoms is possible (if there is limited disease), but rare. Lupus doesn't typically affect the bowel, has skin and kidney features not usually seen in Crohn's etc etc. There is no blood test for Crohn's, while lupus has several blood tests that help establish the diagnosis. JFW | T@lk 11:26, 29 February 2008 (UTC)
List of people with lupus
I'm removing Anna Nicole Smith from this list as she wasnt actually diagnosed, it was merely reported that she may "have had lupus" in the frenzy of media after her death. Also on a side note this list might need revamping, i'm suggesting removal of people who "allegedly have lupus" and all animals...you know who im talking about. Up for discussion... Eleigh33 07:15, 5 March 2007 (UTC)
- The whole thing should be removed. These add nothing to articles, and serve solely as trivia lists. If a record must be kept as a grouping on wikipedia, they can be added to a category "individuals with lupus" or something of that nature. Someone who comes here to read about lupus learns nothing additional about lupus from this list.--Crossmr 05:07, 17 August 2007 (UTC)
- If depends what approach to lupus you're taking. If you want to learn more about how it has impacted peoples' lives then such a list may prove both convenient and educational. Animals definately need to be removed from the list though... (169.232.121.30 (talk) 20:38, 7 March 2008 (UTC))
Lupus Etymology
"The origins of the name are uncertain, but may derive from a characteristic reddish rash that purportedly resembles a wolf's face." - Not quite, traditionally term lupus was used to describe skin erosion diseases that may look like wolf bites. —The preceding unsigned comment was added by 68.63.190.162 (talk) 05:19, 19 March 2007 (UTC).
are the anti nuclear antibodies getting in to the cells or hitting cell fragments, etc
Are these diagnostic antibodies getting in to the cells?
Systemic lupus erythematosus
Shouldn't we move this article to Systemic lupus erythematosus? That page currently redirects here. In the article, the disease is called by its full name, in any case. -- Ec5618 22:36, 20 June 2007 (UTC)
Epidemiology Section
The epidemiology section of this article is possibly the most redundant thing I've ever read. The entire section paragraph could probably either be omitted or incorporated into the first, even though nearly all the information is given in the opening. Just a thought.
Citation [22] - Erratum re History of Chinese Medicine (acupuncture)
There are a number of factual errors in Dr. Cheng's article on lupus. She is trained as an acupuncturist, but apparently never studied the history of Chinese medicine! TCM is a recent invention and does NOT represent the several-thousand-year history of documented Chinese medical scholarship. TCM is a very watered-down version of Chinese medicine created by Chairman Mao. Mao brought the top 300 doctors of Chinese medicine together to work out a Chinese medicine curriculum that could be taught in a single year's time (historically, Chinese medicine was learned in a 10-year, one-on-one apprenticeship). Mao had an admirable purpose: to send out tens of thousands of what became known as "barefoot doctors" to the very poorest and most rural areas of China where there was virtually no medical treatment available.
I would reference someone who knows more about the medicine she is trained in. You can find classically trained Chinese medical doctors in every country BUT China, since Mao outlawed classical medicine for a time as a degenerate remnant of the era of the emperors. However, he changed his tune and re-allowed training in the more advanced and complicated aspects of Chinese medicine, and very recently, with scholarly interest in classical Chinese medicine being extremely high around theh world, the government is finally responding to calls from indigenous Chinese medical scholars to recognize how precious their written record of classical medicine is.
I am a student of classical acupuncture (we have to study TCM as well, to pass the boards here in the States, since TCM is the only acupuncture that has been known here in the States for most of the past 30 years since Nixon's aide publicized his acupuncture treatment in about 1971. My father was the anesthesiologist who was present as back-up during several open heart and brain surgeries performed using only acupuncture as anesthesia at the hospital where he worked in Los Angeles, White Memorial Hospital.
It's time to get the facts straight on the true tradition of Chinese medicine. There is a treasure trove of information from some of the greatest minds on Earth during the past 3,000 to 5,000 years of recorded Chinese medical history. New troves of documents have been discovered in caves in China, and scholars are salivating to get their hands on them and find out what new information might be contained in these ancient documents.
Nothing I am saying here is hard to confirm. It is all well-known in China. Here is a citation from a German scholar of Chinese medicine who is a professor at a Chinese medical college in Portland, Oregon: "CHINESE MEDICINE IN CRISIS: SCIENCE, POLITICS, AND THE MAKING OF "TCM"" by Heiner Fruehauf. Here is a short bio on him:
Heiner Fruehauf has researched topics related to East Asian civilisation and Chinese medicine for 19 years. He has studied at the Universities of Tubingen, Fudan, Hamburg, Chicago and Waseda, and holds a Ph.D. from the Dept. of East Asian Languages and Civilisation at the University of Chicago and a post-doctoral degree from Chengdu University of TCM. During a five year sojourn in China, he studied Chinese medicine both within the institutionalised TCM model, as well as the traditional lineage system that continues to function outside PRC government schools. He has published widely in the fields of Chinese and Japanese culture, with a specific focus on the traditional aspects of Chinese medicine. Presently he directs the Classical Chinese Medicine Program at the National College of Naturopathic Medicine in Portland, Oregon, and leads annual study tours on classical Chinese medicine and qigong into the mountains of Western China. He can be reached at heiner@teleport.com
Enjoy learning about this amazing medicine, the best-documented ancient medicine in the world.
karen.bauer@stanfordalumni.org —Preceding unsigned comment added by 24.239.168.188 (talk) 17:50, 4 November 2007 (UTC)
LUPUS?!!?
IS IT LUPUS!?!?!?! —Preceding unsigned comment added by 75.72.21.221 (talk) 03:11, 21 November 2007 (UTC)
- Could be neurological... --Meridius (talk) 22:17, 24 November 2007 (UTC)
Semi Protect
Can we semi protect this page it seems to get vandalized very often.64.203.19.96 (talk) 06:09, 21 November 2007 (UTC)
House 2
Sorry to bring this up again, but this is a relatively rare disease. I doubt that many people hear of it during the course of thier lives, unless they a relative or friend are diagnosed. I suspect that the way a lot of people hear of the disease is through the running joke in House M.D. For this reason I would put at least a cultural reference section stating this. If needed you could put a one line section somewhere stating why Lupus seems to have almost any symptoms, and why it's always suggested in the TV show. --J.StuartClarke (talk) 16:14, 21 November 2007 (UTC)
- Agreed, a cultural refernce section would be helpful. 200.3.193.101 (talk) 22:45, 15 April 2008 (UTC)
Accupuncture??
Since there is no evidence whatsoever that any of these ancient 'quack' remedies have any effect at all beyond the placebo effect, I would ask that the Accupuncture reference be removed. It is divisive and misleading, and potentially dangerous. —Preceding unsigned comment added by 218.214.138.11 (talk) 05:33, 23 November 2007 (UTC)
NEJM on pathogenesis
http://content.nejm.org/cgi/content/short/358/9/929
Getting interesting. JFW | T@lk 01:15, 28 February 2008 (UTC)
- http://content.nejm.org/cgi/content/abstract/358/9/900
- More genetic linkage JFW | T@lk 09:19, 7 March 2008 (UTC)
Name
There should be some simpe ways to get to this page like just typing "Systemic lupus" or " SLE Lupus" because you are sent to other pages for both "SLE" and "Lupus" (which probably the 2 most common thing people will type) and the full name of the article is easy to mispell. —Preceding unsigned comment added by 130.184.237.159 (talk) 20:31, 23 April 2008 (UTC)
- I believe that Lupus should redirect to this article. What else does it commonly mean in English? The topmost link on the current redirect page is to Wolf (Latin). ...Does that make sense for the English Wikipedia?? I submit that it does not. 138.69.160.1 (talk) 14:09, 2 May 2008 (UTC)
Complement deficiency
Any reason why this article does not talk about the related deficiencies of complement proteins, in particular C1q. Has been linked in the clearance of apoptotic bodies. I would do it myself but I am in the middle of revising for my finals.
Systemic lupus erythematosus and complement deficiency: clues to a novel role for the classical complement pathway in the maintenance of immune tolerance Jeannine S. Navratil Laura C. Korb Joseph M. Ahearn
Immunopharmacology : 42 1999
- There must be other sources. Agree that the link between SLE and complement deficiency is well established. JFW | T@lk 16:23, 11 July 2008 (UTC)
UVA1 phototherapy
24.14.35.45 (talk · contribs), self-identified as the author of Anthony DeBartolo (2004). Lupus Underground: A Patient's Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy That Actually Works - UVA1 Phototherapy. Hyde Park Media. ISBN 0-9763428-0-4. has left a note on my talkpage to ask why I have repeatedly removed mention of UVA-1 treatment. To clarify here: there is no evidence that this treatment is anywhere beyond early clinical trials, and is not yet in widespread clinical use. Failing corroboration on its popularity from independent sources, I don't think UVA-1 phototherapy should be mentioned. JFW | T@lk 16:23, 11 July 2008 (UTC)
- correction - i've left more than a note on your talk page Jfdwolff...but if you wish to move our discussion to this page, no problem.
- if nothing else, i think UVA1 needs to be included under "Treatment research" (even though it's used off-label today) since what many of the trial drugs are attempting to do, we already know UVA1 does.
- i invite all to read the most important chapters of 'Lupus Underground' here: [5] (password = lupuslight) --- especially appendix b - research from 1987-2003...you'll find a few of the more recent studies on the book's website - http://www.lupusunderground.com
- how about this entry under treatment research?: "UVA1 Phototherapy - a promisiing therapy that uses ultraviolet UVA1 radiation - long UVA wave lengths that do not promote sunburn and which are thought to block inflammatory immune factors by promoting apoptosis (cell death) in T cells. Several studies, both in the U.S. and Europe, have shown that UVA1 phototherapy lowers disease activity in SLE."
- BTW -the "Clearance deficiency" section nicely explains the UVA1 action, but it is unproven....so why is this allowed? this is, however, the same action that makes UVA1 effective for morphea & scleroderma - simply put, it kills immune cells. —Preceding unsigned comment added by 24.14.35.45 (talk) 17:12, 11 July 2008 (UTC)
- Spaced for readability. As I've pointed out on your talk page, the question is also one of medically reliable sources (of which your book is not due to the publisher) and undue weight. If UVA1 is a regularly used treatment, then the sources must come from peer-reviewed journals and books published by university or medical press.
- Clearance deficiency is referenced to the Journal of Autoimmunity, and there are other references on pubmed that discuss the term (i.e. PMID: 15893710; PMID: 16394661; PMID: 16724805 and a total of 79 searching for "clearance deficiency lupus erythematosus"). UVA1 lupus erythematosus produces 7 hits. This suggests WP:UNDUE; I would suggest working with the reliable sources to build a possible section (perhaps on a sub-page) and requesting a review. Note that "promising" is not neutral (and appears inaccurate as the latest article on pubmed was in 2006), and "several studies" is weasel-wordy. I would suggest citing, linking and summarizing the studies. WLU (talk) 18:27, 11 July 2008 (UTC)
my book may not be a "medically reliable source" but it's filled with medically reliable sources....as i said: appendix b - research from 1987-2003 + my interviews with top experts in the field.
my point about 'Clearance deficiency' (which by the way Dr. Hugh McGrath Jr. pointed out to me when he read it) is not that no one has ever heard of it - Dr. McGrath's point was it has never been PROVEN to be the case in lupus...so please, stop with the straw man technique ....who cares how many "hits" you get for the term -- what do the citations say?
and what in the world does 2006 as being the last pubmed UVA1 hit have to do with anything?
as for use of the term "promising" - fine - change it to "proven" —Preceding unsigned comment added by 24.14.35.45 (talk) 21:08, 11 July 2008 (UTC)
i've posted it under a newly created hed = alt med ...any objections? if so, please explain them...thanks24.14.35.45 (talk) 00:18, 12 July 2008 (UTC)
- Please space your posts appropriately per talk page guidelines. You might also want to review undue weight again - we are not obligated to report every possible topic, only the notable ones. It would be particularly helpful if you actually read the policies and referred to them rather than attempting to convince purely through logic, which is considered original research and forbidden. (the three revert rule is also a concern, and I believe you're in danger of violating it).
- Your book is not a reliable source, and can not be cited. You can, however, cite the sources it contains directly so long as no original analysis occurs (i.e. you don't cite the articles to re-state the conclusions in your book). Again, I point you to pubmed, where in combination with diberry you can produce perfect, error-free templates. Virtually everything found on pubmed can be considered reliable, and it's a pretty good index of the attention received by mainstream medicine since it's indexed by the national institutes of health, which is itself a reliable source. Little attention by a mainstream indexing entity suggests fringe topics; the NYT only suggests that it may one day be a treatment, not that it is.
- Alternative medicine is itself a fringe topic and its status on wikipedia is tentative and contested. You should carefully review WP:UNDUE as that is the main objection to the section in my mind, and discuss how it is not undue weight to emphasize this topic with essentially its own section. That section is not really about alternative medicine, I would consider it a coatrack for UVA1 therapy; retitling a previously removed section does not change the arguments against including the original content.
- Per our capitalization guidelines the section title is off (should be lower-case "m"); the citation should also be in the form of an inline citation and ideally using citation templates. Gregory House should also be removed from Systemic lupus erythematosus#See also as vandalism. WLU (talk) 00:57, 12 July 2008 (UTC)
- UVA1 is not "alternative medicine". It is an experimental treatment that does not answer to the general definition of "alternative". Could you now stop inserting it until we have arrived at consensus on this page? JFW | T@lk 22:47, 12 July 2008 (UTC)
- FWIW, I support a discussion of UVA1 before unilaterally inserting it. I'd be reverting myself were it not for unusual circumstances. Anon, please make a better effort to convince other editors that there is merit to the section; a sub-page would be an ideal location to draft a section and solicit suggestions from more experienced editors. A civil discussion rather than an edit war will result in a better section that will be defended by other editors rather than removed. I would also suggest signing up for an account so it is easier to communicate (and a sub-page would be specifically yours). Thanks, WLU (talk) 01:22, 13 July 2008 (UTC)
- thanks for the feedback - and yes, i need to review the guidelines, etc around here, but my god they all seem rather complex at this point ... ..that said, my ignorance of the rules notwithstanding, i don't understand some of the comments -- how is UVA1 not an alt treatment when the accepted standard lupus treatment(s), is, has been & will always be drugs? (drugs treatments are considered standard in western medicine) ...put another way, UVA1 is not approved by the FDA (or any other regulatory body) to treat lupus, yet it is used as a treatment, regardless of the number that employ it --- that seems to qualify UVA1 as an 'alt treatment' by any standard....24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
- BTW -why is my book still being mentioned? i'm not posting it.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
- you have a section called "Treatment" - the one line intro states: "There are several means of preventing and dealing with flares, including drugs, alternative medicine, and lifestyle changes." ... there are drug & lifestyle sub-heds, but not a word on alt med...your argument that alt med itself is a 'fringe' topic does nothing but help define what the nature of alt med is - treatments on the fringe - that means they are to be ignored? there are peer-reviewed studies that can be cited to back up the effectiveness of a few of these things so why not include them? (for example, even the FDA admits there's plenty of data that supports the effectiveness of glucosamine sulfate in reducing joint inflammation - it's a standard alt treatment for many lupus patients)-- maybe my questions will answered if i can find the time to study your operating procedures, but i've always thought an encyclopedia was supposed to be a comprehensive reference work ...as an outsider i must say your operating procedures really do seem to undermine your usefulness as a comprehensive reference - it's like you're throwing the baby out with the bath water.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
A treatment is "alternative medicine" if no attempts are being made to prove its efficacy scientifically. Clearly, one would prefer benefits from UVA1 to be confirmed in trials, rather than it being lumped with aromatherapy and meditation?
The book is being mentioned because you are its author. Despite the fact that it is not being mentioned, attempts to mention a treatment that you have devised could easily be interpreted as self-promotion. This alone would be a good reason for you to await consensus, and accept what other users have to say when this happens.
If glucosamine has an evidence base (which it has in osteoarthritis but not AFAIK in lupus) then it is not alternative medicine anymore. Generally, it is very hard to provide an encyclopedic account of which alternative medical treatments are used, because they are so diverse, so poorly regulated and insufficiently discussed in reliable sources. I have no problem with mentioning saw palmetto on the benign prostatic hypertrophy page, or echinacea on common cold, or St John's wort on major depressive disorder, because they are discussed extensively in sources regarded as reliable on medical topics. JFW | T@lk 16:42, 13 July 2008 (UTC)
- for the record, my book does not mention a treatment which i have 'devised' ... my book describes a treatment that Dr. Hugh McGrath Jr has devised - what i've done is replicate his work & written about it.
- also for the record - because nothing treats the disease of lupus directly - only it's symptoms - you'll never find a supplement that has an evidence base for treating lupus --- just its symptoms, which lupus shares with other disorders....for example, look again at glucosamine -- the FDA states: "Preliminary research suggests that glucosamine affects cytokine-mediated pathways regulating inflammation and cartilage degradation and immune responses." http://www.fda.gov/ohrms/dockets/ac/04/briefing/4045b1_04_Summary%20GCSOA%20FAC.htm --- while the form of arthritis lupus patients suffer from does not include "cartilage degradation," there are cytokine-mediated pathways regulating joint inflammation which glucosamine can positively effect....since there's apparently no evidence base that's it's helpful for lupus patients too, but they use it nonetheless, by your definition it's still alternative medicine, so why not include it? ... i understand 'it is very hard to provide an encyclopedic account of which alternative medical treatments are used,' but i don't see why the difficulty of the task would prevent a bunch of bright guys like you to attempt an overview for the sake of comprehension.
- but to make sure i'm understanding your point, let me offer a made-up example --- if there were a large body of evidence that showed, say, hydrotherapy was an effective short-term therapy for the inflammation/pain associated with OA, but it was never tested on a population of lupus patients, are you saying hydrotherapy could never be mentioned in an article on lupus?
- as for your question: "Clearly, one would prefer benefits from UVA1 to be confirmed in trials, rather than it being lumped with aromatherapy and meditation?" ...benefits have been documented in McGrath's successfully completed phase 1 trials, and in a few independent follow-up european studies...but further trials will not occur until someone figures out how to make money on this treatment which now exists in the public domain....so i think it has very much in common with aromatherapy and meditation...another point - if lupus did not effect more than (what's the cut off?) 4000 people, it would qualify as an 'orhpan,' for the same financial reasons, but it's not - there's a couple million of us here in the US alone.24.14.35.45 (talk) 14:37, 14 July 2008 (UTC)
- but to make sure i'm understanding your point, let me offer a made-up example --- if there were a large body of evidence that showed, say, hydrotherapy was an effective short-term therapy for the inflammation/pain associated with OA, but it was never tested on a population of lupus patients, are you saying hydrotherapy could never be mentioned in an article on lupus?
- also for the record - because nothing treats the disease of lupus directly - only it's symptoms - you'll never find a supplement that has an evidence base for treating lupus --- just its symptoms, which lupus shares with other disorders....for example, look again at glucosamine -- the FDA states: "Preliminary research suggests that glucosamine affects cytokine-mediated pathways regulating inflammation and cartilage degradation and immune responses." http://www.fda.gov/ohrms/dockets/ac/04/briefing/4045b1_04_Summary%20GCSOA%20FAC.htm --- while the form of arthritis lupus patients suffer from does not include "cartilage degradation," there are cytokine-mediated pathways regulating joint inflammation which glucosamine can positively effect....since there's apparently no evidence base that's it's helpful for lupus patients too, but they use it nonetheless, by your definition it's still alternative medicine, so why not include it? ... i understand 'it is very hard to provide an encyclopedic account of which alternative medical treatments are used,' but i don't see why the difficulty of the task would prevent a bunch of bright guys like you to attempt an overview for the sake of comprehension.
(bing!)The problem is one of verifiability, not truth. In other words, UVA1 may be a miracle cure that solves all the problems of all lupus sufferers (i.e. it may be true that it is a valid, useful treatment), but until it is written up in a medically reliable source, we can not verify that it's true. Verifiability is the standard because without a source, we are essentially asserting that our opinion is correct. That would probably be original research, but the greater problem is what to do if two editors disagree over whose opinion is correct. The only reasonable solution on a project of wikipedia's scope is to insist on using only reliable sources to expand pages whenever there is a disagreement. In this case, as a medical condition the appropriate reliable sources are journal articles and peer-reviewed books.
Articles must also allocate space and text to represent primarily the mainstream opinion on a topic. In other words, the most appropriate focus for an article is the scientific consensus on a topic, which means most alternative treatments do not get much play as they are generally not scientifically evaluated or reported in peer-reviewed journals. There's a lot of theoretically useful treatments for conditions, but we should not report on them until it has been demonstrated and reported as actually being useful and used by a substantial number of patients and doctors to treat the condition. When the evidence suggests that UVA1 is no more used or attention given than other fringe treatments, placing a section in the article gives undue weight to a topic that is fundamentally not particularly noteworthy as a treatment. If, however, you can turn up a significant number of sources reviewing UVA1 treatment that demonstrates it is effective, or extensively used, then it becomes appropriate. The attention must be given in sources relevant to a medical topic - peer-reviewed journals and scholarly books by university and other presses noted for editorial oversight. WLU (talk) 15:08, 14 July 2008 (UTC)
- you want you want peer reviewed studies? no problem...here's some of what's available on line for free (at least the abstracts):
"Ultraviolet-A1 phototherapy modulates Th1/Th2 and Tc1/Tc2 balance in patients with systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/full/44/7/925 "Efficacy of UVA-1 cold light as an adjuvant therapy for systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/full/43/11/1402 "Ultraviolet-A light prolongs survival and improves immune function in (New Zealand black x New Zealand white)F1 hybrid mice." - http://www.ncbi.nlm.nih.gov/pubmed/3593437?dopt=Abstract "Review : Ultraviolet-A1 (340-400 nm) irradiation therapy in systemic lupus erythematosus" - http://lup.sagepub.com/cgi/content/abstract/5/4/269?ijkey=88b94ab398db0fc95edb6157fa3db060d659b50f&keytype2=tf_ipsecsha "Longterm ultraviolet-A1 irradiation therapy in systemic lupus erythematosus." - http://www.ncbi.nlm.nih.gov/pubmed/9195511?dopt=Abstract "Evidence that Singlet Oxygen-induced Human T Helper Cell Apoptosis Is the Basic Mechanism of Ultraviolet-A Radiation Phototherapy" - http://www.jem.org/cgi/content/abstract/186/10/1763?ijkey=0f861943ea7399c498e8f08e9b22dc5a32d05d3c&keytype2=tf_ipsecsha "Ultraviolet-A1 phototherapy modulates Th1/Th2 and Tc1/Tc2 balance in patients with systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/abstract/44/7/925?ijkey=defa25748e4e3907b6fb2067302663bdf1a6ecfd&keytype2=tf_ipsecsha "Elimination of anticardiolipin antibodies and cessation of cognitive decline in a UV-A1-irradiated systemic lupus erythematosus patient" - http://lup.sagepub.com/cgi/content/abstract/14/10/859?ijkey=28b9579c8b539046283c5998d9ed819b8b3cb116&keytype2=tf_ipsecsha
- how many more do you need before you decide UVA1 deserves a mention?24.14.35.45 (talk) 15:37, 14 July 2008 (UTC)
- Great, I suggest you take those sources and draft a possibly new section on a sub-page (I can set it up if you'd like) and let us know once you are done. I would suggeset the use of footnotes and citation templates. WLU (talk) 15:42, 14 July 2008 (UTC)
- how many more do you need before you decide UVA1 deserves a mention?24.14.35.45 (talk) 15:37, 14 July 2008 (UTC)
- sounds like a lot of energy .... don't think i have enough to also start spending it on wikipedia, but thanks for your offer of help24.14.35.45 (talk) 16:35, 14 July 2008 (UTC)
OK, so perhaps we can conclude the discussion now. UVA1 is not yet ready for prime time, but can be mentioned when there is either evidence of widespread popularity or large studies that prove its benefits. I don't think a subpage is going to be of any benefit. JFW | T@lk 18:19, 14 July 2008 (UTC)
- Based on those sources, here is the sub-page with my comments on each. I'd say that more attention is needed in higher profile journals before a section should be added, but at least with a sub-page to start with it will be easier to integrate new information and add it if/when it happens. If it's a truly successful treatment, then it is inevitable and just a matter of time. So we might as well wait. WLU (talk) 20:28, 14 July 2008 (UTC)
- thanks again, but i can't edit the top section of the sub page you set up - there's no edit 'button' ...24.14.35.45 (talk) 22:45, 14 July 2008 (UTC)
simple treatment saving lives
Have you heard of the Road Back Foundation? There has been much success treating lupus and other connective tissue disorders with AP(antibiotic protocal). There are many testimonials of people that have given up hope, only to find this simple treatment affective. Check out the book by Henry scammell called"The Mew Arthritis Breakthrough". Grammies4god —Preceding unsigned comment added by Grammies4god (talk • contribs) 13:21, 14 October 2008 (UTC)
- This viewpoint has certainly been advanced on some pages, and on inspection of the evidence there is very little research showing any benefit from antibiotics. Moreover, there are concerns that long-term use of antibiotics might cause antibiotic resistance in bacteria. Finally, some antibiotics (such as minocycline) are known to be immunomodulators as well, indicating that we might as well use immunomodulators that don't carry the risk of antibiotic resistance.
- Antibiotic protocols are conspicuously absent from systematic reviews and narrative reviews in medical mainstream sources. This makes it very hard to include AP treated per WP:MEDRS. JFW | T@lk 13:40, 16 October 2008 (UTC)
You could have asked before removing
The finding has been reported on several studies. http://www.ncbi.nlm.nih.gov/pubmed/11221481 http://www.biomedexperts.com/Abstract.bme/14526478/EEG_examination_in_patients_with_systemic_lupus_erythematosus http://lib.bioinfo.pl/pmid:9660013 http://www.ingentaconnect.com/content/els/00134694/1996/00000098/00000005/art83589 http://www3.interscience.wiley.com/journal/120122847/abstract http://ard.bmj.com/cgi/reprint/37/4/357.pdf http://cat.inist.fr/?aModele=afficheN&cpsidt=16669598 —Preceding unsigned comment added by Inductionheating (talk • contribs) 08:15, 13 November 2008 (UTC)
- Could you clarify which edit you are referring to? If there are indeed typical EEG changes in people with SLE, what is their diagnostic and therapeutic relevance?
- In general, I would suggest posting PMID codes for these articles rather than URLs to various websites. All you need to do is type PMID and the number, and the wiki will turn it into a link to PubMed. JFW | T@lk 18:01, 13 November 2008 (UTC)
- I didn't sourced that info, because it has become a common finding. It's not typical as it is not a diagnostic tool. Whatever or not it is worthy of inclusion I do not know, I'll leave that to you. Inductionheating (talk) 19:47, 13 November 2008 (UTC)
"Common findings" usually still need a citation. In this case, I'm unsure if we need to mention EEG findings in asymptomatic lupus patients, because it would be pointless to do this investigation without expecting any information that would alter clinical management. JFW | T@lk 23:35, 13 November 2008 (UTC)
Distribution
Why is the disease so much more common in women? If it is known, it should be included. LordAmeth (talk) 03:35, 20 November 2008 (UTC)
- I agree that a good source on this would be useful. Women are generally more prone to autoimmune conditions. JFW | T@lk 16:16, 20 November 2008 (UTC)
- It's like several other autoimmune conditions which affects more women than men, parts of it has to do with hormal differences, testosterone modulate autoimmune response, it appears that estrogene does quite the opposit of what testosterone does. Sources could be provided about this but it would be more useful to add it in an article about autoimmune diseases in general. Also relevent is that generally the autoimmune diseases which affect more women that men, when they hit men it does it with a worst outcome. There are several suspected reasons for this but they fit better in a more general article about autoimmunity. Inductionheating (talk) 05:51, 26 November 2008 (UTC)
Just to be more precise: is it correct to say that it affects to hispanic women?
I mean, Systemic Luous Er.is not common among Spaniards. Shouldn't it say "latin americans" or "native south or central american" women. Citing Wikipedia: Hispanic (Spanish: hispano, hispánico) is a term that historically denoted relation to the ancient Hispania (geographically coinciding with the Iberian peninsula; modern day Spain, Portugal, Andorra, and Gibraltar) or to its pre-Roman peoples. The term is now used to convey the culture and peoples of countries formerly ruled by Spain [...]. Should it be corrected? —Preceding unsigned comment added by Karljoos (talk • contribs) 19:11, 28 December 2008 (UTC)
- We have to follow the wording used in the medical source. If the source says "hispanic," we must say "hispanic." The medical literature may have a precise definition of "hispanic" that is different from the way it's used elsewhere. The Wikipedia entry on Hispanic gives many meanings, and the most popular one seems to be primarily a political definition.
- Obviously native Americans from Mexico and Guatemala are for epidemiological purposes different populations than Europeans of Iberian descent, and you can't assume that a genetics-linked medical finding for one will be true for the other.
- But I noticed there was no source to support the claim that SLE is more common in hispanics and other groups. I checked that in Harrison's and there was no mention of that. In general, SLE is more common in populations as they live away from the equator and toward the poles, and that's the opposite of most American hispanic populations. I'll flag it [citation needed] and remove it if no one can come up with a source. Nbauman (talk) 19:46, 28 December 2008 (UTC)
- An extensive cohort study known as LUMINA was (is?) being conducted to assess the epidemiology of SLE in U.S. minorities. There's some data in PMID 15246029; perhaps it can be of use. Fvasconcellos (t·c) 19:53, 28 December 2008 (UTC)
- I saw that. They're studying hispanic populations, but they don't say SLE is particularly prevalent in hispanic populations.
- I just checked the NEJM review article on SLE, and they mention an increased prevalence in blacks, but don't mention anything about hispanics.
- Obviously you can't assume that just because a disease is more prevalent in blacks, it's also more prevalent in hispanics. Or native Americans. Nbauman (talk) 00:04, 29 December 2008 (UTC)
- Well, of course. I was merely suggesting it as a possible source of relevant information, not a source to back up the statement currently in the article. I remember an article from a few years ago (around 2000–2001) stating the prevalence of SLE in Hispanics had never been reliably studied. Perhaps that's still the case? I'll try to track down a citation. Fvasconcellos (t·c) 11:26, 29 December 2008 (UTC)
- OK, it appears that particular statement came from the article's first reference (The Lupus Foundation of America): "Lupus is two to three times more prevalent among people of color, including African Americans, Hispanics/Latinos, Asians, and Native Americans." Fvasconcellos (t·c) 11:33, 29 December 2008 (UTC)
- Well, of course. I was merely suggesting it as a possible source of relevant information, not a source to back up the statement currently in the article. I remember an article from a few years ago (around 2000–2001) stating the prevalence of SLE in Hispanics had never been reliably studied. Perhaps that's still the case? I'll try to track down a citation. Fvasconcellos (t·c) 11:26, 29 December 2008 (UTC)
- Obviously you can't assume that just because a disease is more prevalent in blacks, it's also more prevalent in hispanics. Or native Americans. Nbauman (talk) 00:04, 29 December 2008 (UTC)
- Then why does Harrison's, and the NEJM review article, only say that SLE is more prevalent among African Americans, but doesn't mention hispanics? I tried to find specific prevalence statistics by ethnic group, but I couldn't find any. I searched Google, and also searched PubMed for "((Hispanic Americans/statistics & numerical data) [MH]) AND ((Lupus Erythematosus, Systemic) [MH])" and couldn't find any citations. So I think your recollection is right. There are articles that say SLE is more aggressive among hispanic patients, but nothing about prevalence in the hispanic population. I can't find a peer-reviewed primary source for the claim that SLE is more prevalent among hispanics. I invite someone else to try. It might be mentioned incidentally in one of those LUMINA publications.
- The Lupus Foundation of America may be a reliable source by Wikipedia definition, but that doesn't mean it's true. I checked a dozen mentions of "hispanic" on their web site, but couldn't find a source.
- BTW, getting back to the original question that started this thread, Medline uses "Hispanic Americans" as a thesaurus term. So it has a very precise meaning. If that's the term a medical source uses, we can't change it. So Karljoos has a point. If the source was referring to hispanic Americans, the entry should reflect that. Nbauman (talk) 17:34, 29 December 2008 (UTC)
- I found the article I was referring to—it's a 2001 review (PMID 11224734), and the abstract states "There have been no studies of the prevalence of osteoarthritis, rheumatoid arthritis, or systemic lupus erythematosus among Hispanic populations". Maybe there still haven't been any. I'll have a look at the LUMINA publications, but it won't be easy—over sixty articles using its data have been published.
- I agree that if the source for our current wording was indeed the Lupus Foundation of America, we don't even know how accurate it is; the website's statistics section doesn't say where it, well, got its statistics from :) If a more robust source (I won't say "reliable", because the foundation does appear to meet that definition) can't be found, perhaps the statement should be removed altogether. Fvasconcellos (t·c) 00:12, 30 December 2008 (UTC)
- That's the Wikipedia paradox -- it doesn't have to be reliable, it just has to be a WP:RS. In medical entries, I think the standards for WP:RS are by custom a bit stricter. Disease organizations do sometimes exaggerate the importance of their disease.
- If you do have access to those LUMINA publications, you can just start with the most recent 1 or 2, maybe a good review-type article. They often have a general introductory background with the current epidemiology. I wouldn't read 60 articles unless somebody gave me a grant to do it. Nbauman (talk) 16:56, 30 December 2008 (UTC)
- (outdent) Well, I have access to only a few. I read the most recent one I could obtain and it summarized no relevant findings on prevalence. What I did find was a comprehensive August 2007 NIAMS report, Future Directions of Lupus Research. It has a "Special Populations" section that summarizes the most important LUMINA findings, but I found what matters most to this discussion in the report's "Epidemiology" section. It's in the public domain, so I'm quoting it:
- Accurate estimates of the number of people who have a disease – as a whole and within specific groups – are important for a number of reasons, including understanding the disease and its impact; predicting groups and individuals who are most likely to develop lupus and, thus, are candidates for screening and preventive care; and providing care and services to people with the disease. Getting accurate estimates and updating them periodically can also enable researchers to determine if disease incidence is increasing and if so, start taking steps to understand why.
- But estimates about the number of individuals with lupus vary widely, depending on the study from which the estimate was derived. Different study techniques, methodologies, populations and definitions of what constitutes lupus can lead to vastly different prevalence estimates. The range is large and tells us little about the true magnitude of the problem.
- What most researchers agree on is that lupus is more common in women than men and that African Americans, Afro-Caribbeans, Hispanics, Asians, and Native Americans are affected more commonly than Caucasians. But even the degree of that discrepancy is disputable. The estimates range from a five to nine or 10 times increase among those high-risk populations.
- Prevalence and incidence figures for other groups and specific lupus-related problems can be even more problematic.
- So, what do you think? Shall we correct it ot not? The problem is that the study is America centered, where the definition Hispanic is applied to all Spanish speaking people, when for epidemiological purposes European (= Spaniards) populations are different than those from Latin America. --Karljoos (talk) 00:54, 1 January 2009 (UTC)
No. "it affects Hispanic women" is right. 75.118.170.35 (talk) 23:33, 24 June 2009 (UTC)