Talk:Klinefelter's syndrome/Archive 1

This page is an archive of past discussions. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page.

Initial comment

Some is this article is taken from a 1993 public domain source, "Understanding Klinefelter Syndrome, A Guide for XXY Males and Their Families" by Robert Bock of the Office of Research Reporting, NICHD, NIH Pub. No. 93-3202 at http://www.nichd.nih.gov/publications/pubs/klinefelter.htm

It should be merged into the existing article text.

Strip this article

Direct quotations in the manner of interviews and such a meandering, magazine-article approach are not appropriate for an encyclopedia. There's a lot of POV here and useless information. Unless strong objections are voiced, I'm going to cut a wide swath of deletion throughout and pare it down to a facts-only format as we have for other medical disorders. Jeeves 09:07, 16 Apr 2004 (UTC)

The material below appears to have been data-dumped in. The fact that something is public domain doesn't mean we should automatically put it into an article. The style, and the sheer amount of information, was not encyclopedic. However, there was plenty of good material, so here it is for reference. Someone with some time can go through and incorporate appropriate bits into the article. Isomorphic 02:34, 2 Aug 2004 (UTC)

The material below is taken from a 1993 public domain source, "Understanding Klinefelter Syndrome, A Guide for XXY Males and Their Families" by Robert Bock of the Office of Research Reporting, NICHD, NIH Pub. No. 93-3202 at http://www.nichd.nih.gov/publications/pubs/klinefelter.htm and should be merged into the article text above

I cut the article, since it was bloating this talk page and it had been here for a year. See the link above or an old talk page if you want to look at it.--Prosfilaes 05:34, 17 October 2005 (UTC)

Abnormality

It's not a common variation; it's less than 0.1%. And the negative connotations of "abnormal" are appropriate; there are not positive features listed in the article. Let's not whitewash this.--Prosfilaes 14:47, 27 September 2005 (UTC)

It has nothing to do with "whitewashing" to remove an expression that is judgemental; just because there is nothing postive listed is not a reason to call something "abnormal". And 0.1% is still 1000 people out of one million -- people who usually object to be called "abnormal", and who therefore object to have the condition called "abnormal", too. -- AlexR 04:05, 1 October 2005 (UTC)

Let's stay away from personal attacks like "POV-pusher", even in the edit comments. 1 out of 1000 is pretty rare, and variations usually refer to something fairly common. I don't see why we should avoid using the word abnormal to describe this, even if it can have mild negative connotations, especially as Klinefelter's syndrome is not a positive thing. --Prosfilaes 20:17, 1 October 2005 (UTC)

AlexR, please assume good faith. A variation that occurs in one out of a thousand cases can be accurately described as "abnormal". Prosfilaes doesn't need to have some POV in order to think that the word is appropriate. That said, given that the statistics are shown in the same sentence, it is not obvious to me how the article gains by using the word "abnormal", and at least one person feels strongly that it detracts from the article by being off-putting. Unfortunately "one of the most common genetic variations" has the potential to mislead someone quickly scanning the paragraph. What if the sentence were to read:

~~Human males usually have an XY karyotype.~~ The XXY chromosome arrangement is one of the most common genetic variations from the XY karotype, the norm in human males. It occurs in about 1 in 1,000 male births...

I'm not invested in that wording, but I suggest that some alternate phrasing might accomodate both the desire to stress the condition's statistical rarity, and the desire to avoid even the slightest hint of judgemental language. The fact that the condition is an undesirable one is perhaps an important point that could be mentioned in the first paragraph: "It is named after Dr. Harry Klinefelter, the medical researcher who first described this syndrome in 1942, and is associated with additional risk for some medical conditions." Jkelly 00:27, 2 October 2005 (UTC)

Stop whitewashing

I'm really really tired with the whitewashing of this article. Descriptions of all the disorders use the word "rare" or "slightly"; but the discussions of rare X-linked disorders never mention how rare they are in normal males.--Prosfilaes 03:18, 31 October 2005 (UTC)

>>Since males at the end of the XXY spectrum are at no greater risk for the conditions mentioned than women, it sounds unrealistic to have 'increased risk' in the opening paragraph.

The linked article says that they will most probably be infertile and most have some degree of language impairment. They're also at risk for male problems (including a high risk for gynecomastia) that women just don't have to worry about.--Prosfilaes 02:24, 4 November 2005 (UTC)

>>Gynecomastia is not a health problem, it's simply increased male breast tissue. The ratio of infertility in XXY is unknown, however it is certain that many XXY males are not infertile.

Actually almost all XXY males are infertile. Those who do get their wives pregnant typically need to do so by testicular biopsy. Gynecomastia IS a health problem, I take care of up to 8 gynecomastia patients a day and they are all suffering from the deformity. I do know about both gynecomastia and Klinefelters since I have been taking care of patients with it for 30 years.--DrBermant 16:09, 22 March 2007 (UTC)

Gynecomastia is listed in the category "health conditions related to obesity", has negative social and psychological effects, and is frequently cured by drugs, surgery, or radiation. The source above says that XXY males are infertile; we need a contrary source to change that. Wikipedia demands that things have verifiable sources. --Prosfilaes 01:58, 5 November 2005 (UTC)

Another cure for gynecomastia is phsychotherapy. I say this as a "sufferer" of 46/47 XY/XXY Klinefelters mosaic (this is admittedly on the low end of the spectrum of troublesome symptoms). Some of us just choose to live life fully without scalpels and drugs. --MalcolmGin 13:45, 22 March 2007 (UTC)

Conflicting facts

These sentences from the variations section factually:

The 48, XXYY (male) syndrome occurs 1 in 17,000 births and is also considered to be a variation of Klinefelter's syndrome. XXYY is no longer considered a variation of KS, although it has not yet been assigned an ICD-9 code.

I have changed the first of the two sentences to coincide with the second sentence, but I am not familiar with this topic and am uncertain of which statement is correct. --Matthew 00:21, 11 May 2006 (UTC)

XXY

XXY redirects here. It would be great if there could be article on the more general phenomena rather than exclusively focusing on the human application. I was looking for this non-existant article after reading abouy all male calico cats being XXY. If there is a more general article under another name I can't find, please make a proper disambiguation. But somehow I suspect it more of the overwhelming human bias of WP!--71.81.70.212 04:16, 22 November 2006 (UTC)

It's not that common a condition, and the concept only applies to species who have mammalian sex determination. Cats are known about, but the overwhelming knowledge is human, it's not the bias of wikipedia per se as much as the bias in the literature. - cohesion 06:53, 22 November 2006 (UTC)

Atrophied testes

The article doesn't mention that XXY males invariably have atrophied and firm testicles. According to many studies (sorry, lost the links) this atrophy, which is often severe, is found in 99 to 100% of XXY men, like sterility, and is considered a hallmark of the syndrome, along with hypogonadism and sterility itself. A population study carried out in Denmark on 14 XXY males (and 12 XYY) found that no one had a testicular volume above 9 ml, while normal is above 10 and average is 18. Some had a testicular volume under 2 ml, which is a normal volume for a young child. Sorry, I lost the links but I can provide a picture of a page of that study that I downloaded. Other Wikipedias also clearly state this (fr, es, ...) and people of xxytalk (a forum on Klinefelter's syndrome) confirm that this is the most striking evidence of XXY syndrome. We cannot say that XXY people are tall and lanky (many XY are) and may have gynecomasty (many do) and forget about this! Please improve this article. 80.104.86.84 19:20, 10 February 2007 (UTC)

I'd recommend being careful of connotations. "Atrophy" seems to imply lack of use. Also, "hypogonadism" has, in my presence, been used to refer to the condition of having smaller testicles. I say this as a person with 46/47 XY/XXY Klinefelters mosaic. --MalcolmGin 13:43, 22 March 2007 (UTC)

You would have to feel a Klinefelter's Syndrome patient's testicles to understand why we call them atrophied. They are very small, firm, and can almost make the diagnosis by themselves. The term is fine from a medical point of view. I have seen them so defined in a number of sources over the years.--DrBermant 16:13, 22 March 2007 (UTC)

Doctor, I feel I must note that being a health-oriented masculine human, I actually feel my own testicles pretty regularly, so maybe what I should feel in contrast is a normal phenotypical male's testicles to make the comparison. --MalcolmGin 17:22, 22 March 2007 (UTC)

Strong bias toward medical intervention/plastic surgery?

It seems to me that there is in this article a strong bias toward medical intervention/treatment and plastic surgery advocated for in this article. While I admit I am a low-symptom Klinefelter's patient, and it's true that some variations of Klinefelter's can be strongly affecting from the point of view of secondary symptoms and social acceptability, is it possible that there's a bias here toward the theraputic interventions available?

I'm not an expert on the Wikipedia genetics and medical projects, but I do know, even as a relative newbie on Wikipedia that there's meant to be a bias against POV, but I'm puzzled as to why medical/plastic surgery sources are considered less biased than any other source.

Having been a Klinefelter's patient less interested in strong medicalization and strong medical intervention, I've been refused the opportunity to speak out about potential alternatives in the past, so it wouldn't surprise me if I were shouted down here as well, but is it possible to have a medically-acceptable/scientifically-acceptible article here that also allows for other treatments/therapies/coping strategies? --MalcolmGin 17:31, 22 March 2007 (UTC) Not doing plastic surgery is a reasonable option and one featured here:

http://www.plasticsurgery4u.com/klinefelters_xxy/klinefelter_gyne_nosurgery.htm

but listen to the videos here: http://www.plasticsurgery4u.com/klinefelters_xxy/videos_movies_klinefelter.html

for those who were never given the opportunity to have testosterone or those deprived of their testosterone during prison, they can be tortured souls. Public awareness of the problems that can occur without testosterone are a major concern for those of us who have seen the suffering. I have talked with and evaluated many, many Klinefelter patients over the years. A few just prefer no treatment and that works for them. These individuals tend to be mosiac or patients with a partial problem. Individualization of treatment is always important.--DrBermant 18:45, 22 March 2007 (UTC)

DrBermant, are you quite sure that links to what is clearly a commercial interest are the best NPOV source for information about Klinefelter's Syndrome? --MalcolmGin 01:56, 23 March 2007 (UTC)

DrBermant appears to be the owner of the site, www.plasticsurgery4u.com, which is linked to in references to this article

Whois information:

Registrant:
Dr. Michael Bermant 
(address info elided)
 	 
Domain Name: PLASTICSURGERY4U.COM

Administrative Contact , Technical Contact : 	 
Bermant, Michael
(address and contact info elided)

I don't think it appropriate to link to the site as a reference, and I'm unsure of the policy related status vis a vis NPOV with respect to the editorial bias DrBermant appears to be displaying.

I'm trying to assume good intentions here, but it seems to me as if this article's being leveraged to increase the credibility of the domain in question.

DrBermant, is there another source you can reference, perhaps publicly accessible papers and studies, etc., instead of your domain (writing that doesn't look like it's been refereed or properly peer reviewed)? I think a third party, published source might do as well or better as a reliable source than the links you're using from your domain.

Also please note that the two references you provided in the article both link to the same page, but claim different titles. Perhaps you meant a different link altogether? --MalcolmGin 02:16, 23 March 2007 (UTC)

P.S. An extremely relevant policy to this discussion is Wikipedia:Verifiability, which talks about self-published and self-serving links not being appropriate to an article as a reference. For your first reference, I think you can probably find some non-owned-by-you references to justify that assertion. Probably the NICHD sources mentioned at the top of this discussion page would work: http://www.nichd.nih.gov/health/topics/klinefelter_syndrome.cfm and http://www.nichd.nih.gov/publications/pubs/klinefelter.cfm. For your second reference (the frequency of Klinefelter's births), you can link to pretty much any extant Internet Klinefelter's summary or source to get the frequency info you referenced to your domain, DrBermant, including the NICHD articles I just linked to. While I can't object to linking to your site in the External Links section (I think that's what that section is traditionally for), I don't think that using your site for those references is required, and I think it goes against the Wikipedia:Verifiability policy.

Please let me know your reaction. Thanks, MalcolmGin 02:39, 23 March 2007 (UTC)

Actually you will not find a better reference for these concerns. That is why I built that section of the site at the request of a number of Klinefelter individuals and groups. This referenced material includes the symptoms in people, not medical speak, photographs of real people with the condition not stereotyped pictures that was insulting a number of Klinefelter patients, and videos expressing the joy of finding Testosterone and medical treatment.

I have asked for help from an administrator over your hostile posts and to suggest what should be done. --DrBermant 02:54, 23 March 2007 (UTC)

My posts aren't hostile. Also, you are not certified as a Klinefelter's specialist, but as a plastic/cosmetic surgeon. In the past five years I can find no publication by you as a Klinefelter's specialist. You have one publication as a Gynecomastia specialist, and your licenses do not specify any other specialty. I've looked at your records with both the Missouri and Virginia boards of medicine. I think that I'll put some NPOV labels on this article, because I think you seem to be having some difficulties understanding what I'm talking about, policy-wise. I hope perhaps another peer reviewer can help explain what Wikipedia policy means with respect to reference citation and verifiability. --MalcolmGin 03:00, 23 March 2007 (UTC)

http://www.aaksis.org/whatisaaksis.cfm

Check under the professional advisors.

I have been invited to lecture and help advise Klinefelter groups for about 15 years. I have evaluated thousands for gynecomastia and found a number of undiagnosed Klinefelter patients who are now in treatment because of my help and awareness. I have examined and evaluated hundreds of Klinefelter patients.

Your actions have been hostile / aggressive and that is why I asked for help from a Wikipedia administrator. I defer to their advice on how to manage this.--DrBermant 03:09, 23 March 2007 (UTC)

I disagree. I've been quite civil and have followed Wikipedia's process carefully. You'll notice that I haven't changed your editing at all, but requested that you review it.

You seem to be misinterpreting simple disagreement as hostility. I assure you that this not what I intend, and I wish I could make that clear to you. --MalcolmGin 03:11, 23 March 2007 (UTC)

Dr B, at your invitation, I took a look, and offer the following observations:

If you think these objections were hostile/aggressive, you haven't been around here much. This is both civil and explained.
It sounds like we all agree that treatment is very much an individual choice and preference and the article should not suggest that one is right and the other wrong. My experience is certainly that there are plenty of young men with this who don't want or need hormones or surgery, and the majority are so normal they do not get recognized before age 18. We probably see at least 4 girls with Turner syndrome for every boy with KS, despite KS being 3-4 times more common. On the other hand some men clearly want and benefit from either T or surgery.
Wikipedia editors tend to be very allergic to self-promotion and linkspam. I probably remove some at least once a week from the growth hormone, diabetes, or steroid articles. In other words, if you offer a link to your own site, it had better be really good, and be prepared to defend it.
Having said that, I looked at your site and it was much better than I expected. It has pictures of "regular guys", not dysmorphic illustrations from the genetics books. It does indeed acknowledge that not everyone needs surgery. It is hard to come by this type of illustration for use in syndrome articles, and I think the "normalcy" of the guys in the pictures provides a strongly positive message. I am inclined to vote to keep the link as useful. MalcolmGin do you have a suggestion for a link that more strongly supports non-treatment with reasonable accuracy? How strongly do you oppose this link?
I have never seen so many redundant objection tags in an article. It looks like hell. Anybody object to getting rid of all of them and instead let's list the sentences or concepts that you think need balancing or modifying right here?
Have I missed any of the issues? alteripse 03:41, 23 March 2007 (UTC)

In case it's not abundantly clear, I strenuously object to Dr. B's site being used in the main body article references, but do not object to them being used in the External Links section. I followed the NPOV guidelines to the letter regarding the relevant NPOV tags, but now that the situation is clear, I do not object to the redundant tags being removed.

I do think that it's strongly self-promotional for Dr. B's site to be used as references, and it's not clear to me that Dr. B is qualified (much less certified) to medically/professionally make the claims he's making. As a plastic surgeon and documented specialist of Gynecomastia, he's making psychological treatment claims here.

I do think the site's information is pretty good, but on the same page linked, there is a strong bias for gynecomastia-rerlated plastic surgery, and strong implications that Dr. B is the man to do it. That's self-promotion, and it makes me think Dr. B thinks he can use a Klinefelter's article to self-promote and possibly drive his business. To me, that is simply not kosher.

I will do some research on non-treatment and see if I can come up with some. It may end up having to be a separate section in the article with multiple references. It's my impression that the argument for non-treatment will have to be made by me, as a synthesis of several published articles, and I'm willing to do the bibliographical work and research to write that section, if you deem that approach acceptable. Basically, it's my contention that the symptoms commonly treated in Klinefelter's and other sex-linked aneuploidy are commonly not so far out of the norm that they need to be treated, including various scare tactics I've seen other medical practitioners use to try to get people to take treatment, such as various claims of increased morbidity, crippling osteoporosis, etc.

If I can come up with the work and the research, and the writing, will that be an acceptable way to "balance" the article? --MalcolmGin 13:36, 23 March 2007 (UTC)

P.S. I am starting a project to take photos and upload them to the Wikimedia Commons that would be equivalent to the photos Dr. B. has on his linked site regarding phenotypical expression for both Klinefelter's men as well as for normal men, for comparison. I think that such photos would be very helpful in providing some good comparative visual evidence of the patterns Dr. B. himself is observing. We'll follow Wikimedia Commons licensing and permissions guidelines and be sure to also secure and keep records of model releases before uploading any materials. --MalcolmGin 14:30, 23 March 2007 (UTC)

Thank you for helping me understand what is going on.

Klinefelter's Syndrome males tend to have small firm testicles, incomplete masculinization, female body hair distribution, decreased libido, and sterility. Body shape can vary from a pear shaped to tall and lanky. There is low energy, developmental delays, difficulties with motor skills, learning disabilities, normal or high IQ, social interaction difficulties, and Attention-deficit hyperactivity disorder, Impulse control disorder, and low self esteem.[3]

That reference to the group of symptoms that was not here, I feel is important and do not understand how many factoids need to be referenced to the material quoted with links on a page when the items are separated. The second link, at this time:

1 in 500 to 1000 live male births.[4] is not critial but I put it there since I was changing wrong information about the number of Klinefelters births. If one is to go, I am glad to remove the second.

The article as I found it:

http://en.wikipedia.org/w/index.php?title=Klinefelter%27s_syndrome&diff=116642919&oldid=116381478

was depressing and potentially harmful to those looking for help with Klinefelters, it missed the most important symptoms, treatments, and was defeating in outlook. Just the problem many of the Klinefelter group members complain to me about the public's misconceptions about the disorder. The joy and "light switch" turning on in my head from starting testosterone therapy was one of my projects that I captured on video. The clips here were part of that project but stressed the importance of getting diagnosed and treated. Listen to the emotion of the patient discussing his life after treatment - Testosterone treatment, not plastic surgery!

http://www.plasticsurgery4u.com/klinefelters_xxy/videos_movies_klinefelter.html

I was going to get into that for the page, but then was getting the comments that the information was biased other such comments above.

Thank you for the comments and am hoping to better understand the workings of Wikipedia to work things out.--DrBermant 04:20, 23 March 2007 (UTC)

DrBermant, what bothers me about your writing is, while I appreciate that you've got the gospel about how your medical interventions can help folks who feel badly about themselves and their bodies feel better about themselves, it seems like you are making claims that are related to mental health when you are not board certified for psychological or psychiatric practice.

I do also appreciate that you have at least one page on your site about how cosmetic surgery is not for everyone, I think it's clear that your bias toward cosmetic surgery and other treatments is partly motivated by the fact that you are in business to do cosmetic surgeries. This is what rings the self-promotion bell for me. I do appreciate the high-quality pictures and discussions of the various symptoms you treat, and I appreciate that as a medical doctor you have a strong moral and ethical drive to do what you feel is the right thing with respect to a patient's overall medical health, but your arguments are inherently biased because you are an M.D.~~, and I don't think your claims about mental health are appropriate~~, given that you are not licensed for that, especially in this context of and article about the condition, and not solely about the treatment.

P.S. I can provide citations for other minor corrections. Learning disabilities is too broad, as the only consistent learning disability for almost all sex-linked aneuploids is limited to language learning. Also, I'd love to know your citations for "social interaction difficulties, and Attention-deficit hyperactivity disorder, Impulse control disorder". I hope you are aware that much of the research that established the impulse control disorders were disproved after the 60's/70's because the study population was not picked properly, and the results were clearly biased. --MalcolmGin 13:45, 23 March 2007 (UTC)

MalcolmGin's Contributions? and Reverting this section

Your comments about me to alteripse and your talk about withdrawing your contributions

Just read your alarming characterization of me and my opinions to alteripse. I'm sorry you find my disagreement with you so objectionable, but I do wish you'd be more careful about how you characterize me and my opinions.

For the record, while I do think that we tend to over-treat and over-medicalize health issues in our culture, I don't feel that my opinions about my own treatment should be applied to everyone, nor do I feel that you are unqualified to make all the remarks you make on the article.

I do think you are claiming mental health expertise where you demonstrably do not have the licenses/certifications (I've looked up your board records in Virginia and Missouri), and I think that's unwise, but I have no intention of taking any action about it beyond saying that I think it's unwise.

I also think that you are relying too much on what expertise you have and relying on it as an unverifiable primary source in the references you cite in the Klinefelter's article. It would be better practice to cite other references (such as NIH-sourced/published references, etc.) to support your assertions, instead of linking directly to self-published material you wrote that sits on a clearly commercial site that promotes your business interests.

If you'd like to consider releasing the photos you have on your site to the Wikimedia Commons, they would be usable in the Klinefelter's article, and so, of course, would your opinions/prose.

I definitely do not intend to drive you away from the article contribution, and I definitely do not want you to feel like you have to remove your contributed material, but I would be happy to take up the slack if you decided, anyhow, to leave us (the community of potential editors of the Klinefelter's article).

Please consider assuming good faith. It's one of the ways that we try to avoid conflict and increase productivity on Wikipedia.

Sorry to offend you so by disagreeing with you about some of the things you assert and how you assert them. --MalcolmGin 15:48, 23 March 2007 (UTC)

You have repeatedly accused me of not having the expertise that my Medical Degree, years of training, and years of practice have given me. I am a Board Certified Physician who treats these patients, and deal with psychological issues with my patients every day. I have no problems with disagreements, it is your accusations of ethical misconduct and lack of expertise you feel I do not have. Yet others, doctors, endocrinologists, national Klinefelter groups feel I do have such expertise. You do not recommend new content, you do not offer improvments, you just insult.

Your obsession with my actions are just not worth it.

I also note you have not contributed to the Klinefelter section one bit other than your criticisms. Let us look into your "expertise." What expertise. What recognition? What degree? What have you done to help here?

As a Klinefelter patient, I do understand that you need to be heard, but why are you trying to force your own concepts on others. I speak for my own many patients I have treated and asked me to help educate the public. What are you doing other than criticising. Your accusations of my violating ethical standards is rude and unaceptable. By the way, this was posted on my board, which I removed and moved here.

Enough!--DrBermant 16:09, 23 March 2007 (UTC)

DrBermant, I am saddened that my attempt to clarify my position and try to offer you support was something you took in a way I did not intend. As it seems I cannot effectively communicate with you semi-privately/personally, I will not do so in the future. I was following Wikipedia standards in sending a semi-private/personal message by leaving it on your user talk page, which I assumed you'd understand as you'd communicated similarly with alteripse in the same way.

For what it's worth, I'm happy to contribute to the Klinefelter's article in fact, and will do so as soon as I have time to do so today. I had been holding off on direct contributions until some headway was made about my objections to the kind and format of the references you had previously inserted into the article.

Aside from the fact or your board licenses and the subjects, I withdraw any statements I have made about your overall qualifications. I would object to your asserting that you were a "recognized expert" vis a vis using your business website link as a verifiable reference per Wikipedia:Verifiability, but it seems that you're willing to cede that point one way or another anyway, since you seem inclined to take your ball and go home.

As far as my own contributions and qualifications go, I am a layperson with extensive familial familiarity with biochemistry/endocrinology/chemistry (my father is an emeritus biochemistry professor from UC Riverside, my mother is a retired registered nurse who, when she was working, specialized in the role of charge nurse for intermediate and intensive care units). I personally have a B.S. in general chemistry and some graduate work (but no terminal degree) in physical chemistry. As a Klinefelter's person who is not currently under treatment for any of the related symptoms, and as a lifelong asthma patient, I am very well acquainted with the vagaries of doing my own medical research, including use of libraries and other publicly accessible references, and as you may be able to tell from my technical background, I have the ability to not only read medical literature but to be able to evaluate the published statistics to verify the usability of the generated conclusions. Additionally, my partner/fiancee of 10 years is a scholar in the field of sexuality, including medical and historical research, and she's more than capable of double-checking any conclusions I can come up with from my research into medical publications.

I hope you find my answers satisfactory, and unless you ask anything more of me, I will do my best to avoid interacting with you in the future. --MalcolmGin 16:59, 23 March 2007 (UTC)

Actually, I am an expert in Klinefelter's, lecture about it, write about it, evaluate patients, am involved with Kliefelter groups, am on their board of medical experts and my pulling my contributions has nothing to do with ceeding to your rantings. I have asked again for administrations advice. The source quoted is still the best on the web about the problem, and was built with the help of a large number of Klinefelter patients. I am in fact not impressed with your credentials and pulled the edits to stop your rantings and deferred the issue to administration.

However, I do appreciate your offer to leave me alone and stop rudely accusing me of lacking skills, expertise, or ethics. I look forward to seeing administrations response and or your actual contributions to this section other than just criticism. Perhaps someday you will have such images, videos, or non-medical speak discussion that the public can understand. However, its lack was why those pages I linked were build.--DrBermant 17:32, 23 March 2007 (UTC)

I object to your characterization of my behavior. Ad hominems are not appropriate to this discussion, and as you know, I have been quite careful to be as non-confrontational as possible about our disagreement. I'd appreciate the same from you, Doctor.

With respect to your site's materials, if you are able to release it under licenses the Wikimedia Commons or Wikipedia can utilize, you'd be able to help contribute to making the article here something that would hold up to your standards.

I shall go ahead with maintenance of this article as I am able to, and hope it is some small help to some Klinefelter's folks. Would love your continued contributions, but you, like me, would have to be sure to carefully follow Wikipedia's policies that govern appropriate sources. --MalcolmGin 17:49, 23 March 2007 (UTC)

May I gently point out that you have been awfully critical about Dr B's credentials and additions to the article, yet your own credentials are that you have experience with one person with KS and you have actually made almost no constructive edits or suggestions to this article. Let's stop talking about credentials and authority and settle arguments about facts with references. Okay? alteripse 00:11, 24 March 2007 (UTC)

Agreed, completely. While I may object, I will not force or demand any retraction of any statements, and am more than happy to go about business gathering citations and references to properly support assertions made in the article itself. I think he's quit this thread, and so shall I. --MalcolmGin 00:25, 24 March 2007 (UTC)

I would like to see the allegations of unethical behavior and extensive criticising of my credentials be stricken from these threads and instead replaced by constructive building of this page. If agreed, I will revert to the last version of my edits and remove the second in copy citation to the number of klinefelter births. I would like to keep, as mentions above the link in the symptom section and the link in the web resource sections. I would also like to add a link to the page about doctors missing the diagnosis of Klinefelter movie:

http://www.plasticsurgery4u.com/klinefelters_xxy/videos_movies_klinefelter.html It is just too powerful a statement about poor medical work.--DrBermant 00:44, 24 March 2007 (UTC)

Thank you,

Please do not revert edits. I have already made substantial changes to the last version you reverted to, and plan to do extensive research, citations and writing. Reverting would not be the best idea at this point, given the possibility of editing collisions.--MalcolmGin 01:34, 24 March 2007 (UTC)

I'll go through the article and change what needs changed/provide references from verifiable sources ASAP

Looks like DrBermant reverted his changes. As such, the article probably needs more revisions/references. I'll probably get to it this evening, unless someone else gets to it sooner. --MalcolmGin 17:16, 23 March 2007 (UTC)

Mortality

The JCEM this weeks has a longitudinal study on mortality: http://jcem.endojournals.org/cgi/content/abstract/90/12/6516?etoc. Do we include this? JFW | T@lk 14:51, 6 December 2005 (UTC)

It's interesting the increased mortality in those studied resulted from 'most major causes of death'. Some studies have shown a connection between overall health decay and frequent high levels of emotional stress (http://stress.about.com/od/stresshealth/). Diagnosed XXY males have been noted for greater vulnerability to stress from adverse environments.

Interesting hypothesis. Has it been studied prospectively? JFW | T@lk 03:47, 5 February 2006 (UTC)

Interestingly, I found a survey of Klinefelter's article published in Orphanet Journal of Rare Diseases that cites this JCEM article. What was interesting was that in its Complications section, it cited the most catastrophic Standardized Mortality Ratio (for mosaic 47,XXY males) of greater than 200-fold increase (weirdly, this stat had a really good P value, but a gigantic confidence interval - not something I'm used to seeing, but yes, CI and P are not necessarily in lockstep) over normal XY males as a general risk increase for all Klinfelter's men.

What was odd about this is that in the discussion of the JCEM article (I saw it in JNCI instead), the risk increase is instead argued as 60-fold, so I commented on (the comment is in moderation review now) the Orphanet survey article, asking for the rationale of quoting the catastrophic 200-fold value (which is actually fairly euivalent to normal female risk vs normal male) instead of the discussion's 60-fold figure. If an answer from authors/journal is forthcoming, I'll post about it here. --MalcolmGin 18:24, 30 March 2007 (UTC)

Makes sense. alteripse 22:12, 30 March 2007 (UTC)

Some good references

This article needs a lot of work.

These current medical genetics reference textbooks have good information that could help:

Firth, Helen V.; Hurst, Jane A.; Hall, Judith G. (2005). Oxford Desk Reference: Clinical genetics. Oxford: Oxford University Press, pp. 496-497 ISBN 0-19-262896-8
Graham, Gail E.; Allanson, Judith E.; Gerritsen, Jennifer A. (2007). "Sex chromosome abnormalities", in Rimoin, David L.; Connor, J. Michael.; Pyeritz, Reed E.; Korf, Bruce R. (eds.): Emery and Rimoin's Principles and Practice of Medical Genetics, 5th ed. Philadelphia: Churchill Livingstone Elsevier, pp. 1044-1047 ISBN 0-443-06870-4
Milunsky, Jeff M. (2004). "Prenatal Diagnosis of Sex Chromosome Abnormalities", in Milunsky, Aubrey (ed.): Genetic Disorders and the Fetus : Diagnosis, Prevention, and Treatment, 5th ed. Baltimore: The Johns Hopkins University Press, pp. 306-312 ISBN 0-8018-7928-0
Simpson, Joe Leigh; Graham Jr., John M.; Samango-Sprouse, Carole; Swerdloff, Ronald (2005). "Klinefelter Syndrome" in Cassidy, Suzanne B.; Allanson, Judith E. (eds.): Management of Genetic Syndromes, 2nd ed. Hoboken NJ: John Wiley & Sons, pp. 323-333 ISBN 0-471-30870-6

Panda411 06:05, 23 March 2007 (UTC)

Thank you!

I'm working on an article-related biblio myself, which I'll put here or in the main article soon. --MalcolmGin 15:16, 23 March 2007 (UTC)

Use of sex/gender terminology as interchangeable in this article may be problematic

This terminology discussion I'm about to bring up comes primarily from from sex/gender queer/trans theory, but the idea is that if we're talking about the phenotype (i.e. the body's expression of the genotype, the biological body), then we should be using the terminologies for biological sex (i.e. male/female/intersex), and that if we're talking about the social construction of gender as interpreted from the person's phenotype and other secondary sex characteristics, we should be using the terminologies for gender (i.e. man/woman/transgendered).

I note that in the main article, the first paragraph of "Signs and Symptoms" currently talks about how many of the risks associated with the "far end of the spectrum" (does this mean folks with severe expressions of Klinefelter's Syndrome?) are shared with women. If we were to use this careful gender theory terminology, we should change the word to "females", not "women".

Is this kind of discussion of terminology meaningful or helpful in this context? I know that Wikipedia strives to be authoritative and inclusive, but I know also that cross-training across disciplines like medicine versus gender theory only really works if everyone's on board and wanting to make it work, and I know that this article specifically is much more oriented towards medicine/medical theory right now than towards gender theory. --MalcolmGin 18:05, 23 March 2007 (UTC)

All individuals with Klinefelter are guys, and as far as I know the only difference between "male" and "man" is that the latter is exclusively human, whereas the former applies to any biological "he" whether human or from any dioecious genus other than Homo. I did take Sociology 110, where I learned a difference between sex and gender, but in that class we generally used a Male Vs. Female scheme for sex and a Masculine Vs. Feminine scheme for gender, without limiting Man Vs. Woman to one concept or the other.

To clarify further, anyone with Klinefelter is a "he" despite the rounded hips and smooth face (in some cases, including some just one or the other) that are normally associated with a "she," in case that helps. Speaking as a Biology Major, the convention in our field is simply to call boys (Plural "he") males and girls (Plural "she") females without regard to sociological gender. The Mysterious El Willstro (talk) 07:50, 14 April 2010 (UTC)

This is problematic, because certain individuals may self-identify as a woman (or she) despite being biologically male. I'd say using male/female in the article is the way to go rather than trying to wade into the potentially complex issue of gender terminology related to man/woman etc... To put it another way, gender is a social issue and sex is a biological issue. This being an article primarily focused on biology, the terminology should focus on sex instead of gender. --98.207.107.112 (talk) 08:39, 13 September 2010 (UTC)

Marked all areas where a citation is needed

There are quite a few, and some of them sound spurious, so we should provide citations or delete those assertions.

Still working on putting together meaningful research, but as I put the citations together, I'll try to replace these things with citation-friendly "facts"/interpretations. If my findings seem to signficantly diverge, I'll put together an "alternative viewpoint" or "nontreatment" or some other such section that can ride along with the body of the current article until someone more gutsy than I merges it. :) --MalcolmGin 00:24, 24 March 2007 (UTC)

I'm going to wikilink "psychosocial morbidity" because to a layperson it sounds a lot worse than it actually is

I think we need a short article in the Wikipedia about "psychosocial morbidity" to make it clear that it doesn't actually mean "death" in the literal sense and that no terminal illness is anticipated.

I'll handle the details of getting that up to a stub, at least. --MalcolmGin 12:41, 24 March 2007 (UTC)

Scratch that idea. I found Psychosocial and added a section there and linked instead to that section. I also edited Talk:Psychosocial and gave some justification for doing it.

Depending on editorial choices, it may still be a better idea to move "psychosocial morbidity" to Wiktionary and move our reference to that. I'm currently not comfortable enough with the editorial direction/mission of Wiktionary to know whether there should be specialized medical terms there or not, and I also don't know what consensus direction Psychosocial is likely to take. --MalcolmGin 14:18, 24 March 2007 (UTC)

I paraphrased psychosocial morbidity to experiencing depression and/or social anxiety because they are outside of social norms. Sagefusion (talk) 07:37, 16 December 2008 (UTC)

Archived

I move some of the older discussion, and some of the less edifying recent discussion to and archive page, linked above. I preserved the above sections which contained either relevant recent suggestions or topics for discussion, or good references. alteripse 22:50, 24 March 2007 (UTC)

First set of photos at commons for body morphology project

It may be in the archives by now, but I'd mentioned wanting to provide a commons-hosted, freely re-usable set of phenotypical morphology pictures for males. Styled along the lines of the kinds of clinical pictures I've seen elsewhere, the goal is for each subject to allow 10 photographs of his clothed and torso-naked body to be taken while standing. I'm collecting very light amounts of metadata (age, height, weight, any medical info the subject wants to share), anonymizing the subject's identifying marks, and getting people to participate by photographing friends and acquaintances according to the same scheme.

Though I've had some incident of "Hey, that's a great idea!", I haven't seen any other picture sets come in yet.

However, in case anyone's interested in keeping an eye on the effort/using the pictures, by all means, that's what they're there for. The index is probably the most usable page for watching, but you might also consider watching the Commons:Category:Body morphology project. --MalcolmGin 16:54, 26 March 2007 (UTC)

The second set is now up, and the scope has changed to include all bodies. More definitely on the way as I drum up more "business". --MalcolmGin 02:13, 8 April 2007 (UTC)

Have found some interesting but not entirely helpful information out with respect to X-Inactivation/Lyonization in Klinefelter's and our need for citations

Only our article seems to assert (from what I've found so far) that the syndrome's symptoms derive from genetic expression on the paired Y chromosome. I can't so far find any article/review that substantiates that. Any idea where that came from/who inserted it? Maybe they have a citation we can use.

So far, I've found only two other major themes that talk about how X-Inactivation works with respect to XXY males and the only one that seems to provide an explanation is that the X-Inactivation for XXY males is incomplete or skewed. The other seems to gloss the explanation.

So the round-up is as follows:

Sources for incomplete/skewed X-Inactivation:

Sources that are non-commital/talk about other mechanisms that are in common with normal females (like Barr bodies and vague mentions of partial inactivation, or random X-Inactivation etc.):

Sources for complementary Y genes:

This article.

I think we may need to belly up to the bar and produce some good citations here. On my first pass, I got nothing, but I haven't really thoroughly searched PubMed or gone to a library. Can anyone else help find citations for this? Remember, Wikipedia does not allow original research, and this assertion stinks of it. --MalcolmGin 02:11, 8 April 2007 (UTC)

I dropped a note on Maveric149 (talk · contribs)'s talk page asking about a citation. He was the first author on this article and made the assertion on his first edit. Hopefully we'll hear mroe soon. --MalcolmGin 12:46, 8 April 2007 (UTC)

Note about new Complications section

This should probably be merged somehow into Symptoms, or we could potentially move more of Symptoms into Complications. Regardless, the wording of the actual text in Complications needs to be refined, as it is not obvious that "50 times" refers (I assume) to comparison to typical genotyped males. It would probably take finding/reading a copy of the study referenced to be totally sure. --MalcolmGin Talk / Conts 01:56, 21 May 2007 (UTC)

Kool Cat syndrome?

So, for some reason right now, the opening paragraph to this page refers to "kool cat syndrome" rather than to Klinefelter's syndrome. I'm going to assume that this is just a case of vandalism and switch it back.

171.65.82.36 (talk) 22:26, 4 December 2007 (UTC)

Diagnosis X

The mosaic version of Klinefelter's syndrome was seen on a recent episode of "Diagnosis X" where real doctors and interns re-enact semi-fictionalized accounts of real patients whose conditions were strange and baffling. http://tlc.discovery.com/tv/diagnosis-x/diagnosis-x.html —Preceding unsigned comment added by Bizzybody (talk • contribs) 22:09, 25 June 2008 (UTC)

Most Common...or 2nd?

In the opening, it states both, "Klinefelter's syndrome is the most common sex chromosome disorder," and "it is the second most common disease involving the presence of an extra chromosome." I don't think it can be both of those, for if it is the most common sex chromosome disorder in general, it can't be second to another kind. Does anybody know which is right? PhoenixSunburn (talk) 12:24, 2 February 2009 (UTC)

How about the Down syndrome? Admiral Norton ^(talk) 17:28, 2 February 2009 (UTC)

This is not necessarily a contradiction. It seems reasonable that "Klinefelter's syndrome" is the 2nd most common genetic disorder involving the presence of an extra sex chromosome. Even though down syndrome is more common it is autosomal not sex chromosome based. Jsorr (talk) 13:52, 8 March 2009 (UTC)

Maybe adding language to the text indicating that Down syndrome is the most common extra-chromosome condition, while Klinefelter's is the most common sex-chromosome condition, would be in order. However, getting all of that information into one or two sentences without creating too much of a distraction for parenthetical information might be more easily said than done. 64.85.229.248 (talk) 14:16, 6 September 2009 (UTC)

Treatment

I think it is important to note that although the testosterone replacement is lifelong, it does not correct the infertility that goes along with Klinefelter's. I would add it, but I don't have a reference for it. (D.c.camero (talk) 00:03, 24 March 2009 (UTC))

Gynecomastia

Is there any medical reason to have "excess" breast tissue resulting from gynecomastia removed i.e. is it a threat to the health of the individual? If not, the word "require" in this sentence, "but only about 10% of XXY males' gynecomastia is noticeable enough to require surgery," needs to be changed to something that doesn't prescribe normative appearance as a necessity. Alternately, the section could be changed to read "but only about 10% of XXY males' gynecomastia is superficially noticeable as non-normative" or something similar. I'd make the change right now, but in the event that the breast tissue poses a health risk (other than any risks associated with simply having breast tissue, since, if we're considering that a "health risk", then everyone with breast tissue "should" have it removed), the sentence is fine as it is. 129.89.40.245 (talk) 19:53, 23 December 2009 (UTC)

"Mastectomy may be indicated for gynecomastia, which places considerable psychological strain on the patient and increases the risk of breast cancer." Source: http://emedicine.medscape.com/article/945649-treatment#a1128 — Preceding unsigned comment added by 184.32.116.205 (talk) 18:36, 3 July 2011 (UTC)

Source 4

Immediately before Source 4 is cited, the Article states that not all men who test positive for an XXY karyotype have Klinefelter Syndrome, but I found this to be misleading when I read the actual source. What the source document actually says is that not all men who test positive for the karyotype display all the symptoms of Klinefelter Syndrome, implying that most show perhaps just a few of the symptoms. As for those who express no other symptoms, I would highly suspect that they only have their karyotypes tested (thereby being known and documented as XXY Males) after they find out they're sterile. Given that those men showed no other symptoms than sterility, I can understand the argument that they lack the general syndrome, but are they a majority of those without all symptoms? This point should be clarified, perhaps even by saying, more faithfully to the source document, that not all the symptoms of Klinefelter always line up. The Mysterious El Willstro (talk) 06:28, 18 April 2010 (UTC)

looking for other parents of children w/klinefelters

are there support groups out there ]] —Preceding unsigned comment added by RichardPetersen (talk • contribs) 12:01, 9 May 2010 (UTC)

This talk page is for discussion of how to improve the article, and not for finding support groups. However, if you follow the link at the bottom of the article to the Open Directory Project, you may find useful links there.-gadfium 20:10, 9 May 2010 (UTC)

"require" surgery?

From the article: only about 10% of XXY males' gynecomastia is noticeable enough to require surgery. Something in that sentence is wrong. By its nature, surgery for gynecomastia may be elected to reshape the body according to social or individual expectations, but it's by no means biologically "required" for the functioning of the body. This is important because we don't want to tell people what their bodies should be like. I'm not sure what the right phrasing should be, though. Some options:

...gynecomastia is noticeable enough to indicate surgery.
...gynecomastia is noticeable enough for the individual to desire surgery.
...gynecomastia is noticeable to others.
...gynecomastia is noticeable.
...gynecomastia is significant.

Any other ideas? Kevin Saff (talk) 04:57, 16 December 2010 (UTC) (Talking to myself.) I just noticed the gynecomastia section above from last year. Since no one replied to it, I went ahead and changed the sentence to read:

About 10% of XXY males have gynecomastia noticeable enough that they may choose to have cosmetic surgery.

I think that is as much as we can say. Unfortunately the reference is pretty unclear about the meaning of the 10% figure. Kevin Saff (talk) 05:19, 16 December 2010 (UTC)