Talk:Klinefelter syndrome

Template:MedportalDYK Template:V0.5 Template:MedGen 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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

>>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)[reply]

>>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)[reply]

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)[reply]

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)[reply]

Mortalitiy

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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:[reply]

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)[reply]

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)[reply]

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 li nks 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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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)[reply]