David Duckslammer
Active Member
Reg: 01-17-07
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05-13-09 01:50 AM - Post#54842
If a doctor has been out of medical school for more than few years, he may have been educated with the old information about Klinefelter Syndrome that says XXY people are all fat, retarded, have bad social skills, are unemployable, unstable marriages, likely to end up in prison, unable to live on their own - in a word, hopeless.
The Merck Manual of Nursing, until just a few years ago, even went so far as to say in their online and print edition that because XXYs are such a terrible drain on the resources of the family and society that the mother of a fetus diagnosed with XXY should be advised to have an abortion. Though they have now re-written that chapter and dropped the reference to XXY, there are still millions of copies with the abortion advice sitting on doctors' and nurses' desks throughout the country.
This is what the old medical books really say, going back 50 years, and until relatively recently this is all doctors knew about us. The consequence of these myths is that when an XXY person goes to a doctor who believes these things, he is not likely to get the best medical care, not for XXY or anything else. After all, why waste time and money treating someone who is a lost cause?
In November 2008, a urologist at the University of Cornell released an updated review and survey of KS that tries to dispel those old myths. Reading it is like a breath of fresh air. He paints a positive, affirming picture of us, and talks at length about treatment, health issues, and fair bit about brand new research on fertility options.
The information on fertility options is all brand new as of 2008. Up until now, it was automatically assumed every XXY was sterile. It's not true. With assisted fertility techniques, many adult XXYs can parent a child and quite a number of us already have.
There is also a possibility that adolescents may naturally ejaculate viable sperm. This is somewhat controversial and a matter of ongoing study. This paper was published in 2008; by the time you read it, likely the world will have turned a few times and the current wisdom will be different. If you have questions of fertility, follow the advice given in the paper and contact an expert.
Besides fertility options there is information about the more common health problems such as breast cancer and the risk of spontaneous blood clots (embolisms). Adult XXYs need to be monitored for these.
This document was written by a doctor for other doctors. I suggest to every XXY and every parent of an XXY to download it, print it, and take it to your doc. Unless he has already read it, he will learn something new. Make an appointment, drop the report off a week early so he has time to read it, and then ask him to explain it to you in plain language. Then you know that he knows, and you will a learn a few things, yourself.
Download it by right-clicking your mouse right here and select "save link as..." or "save to disk".
Note: this doesn't work in some browsers for no obvious reason, but it does work with google chrome and firefox. I don't know about any others; those are the two I use.
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Takinoxy
Active Member
Loc: Barcelona, Spain
Reg: 02-19-09
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05-13-09 09:32 PM - Post#54881
In response to David Duckslammer
Great, thank you for the research!
uhmm.. for some reason the link doesnt work for me.
Taki-Noxy
"And remember, Respect is everything!" (GTA2) |
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David Duckslammer
Active Member
Reg: 01-17-07
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05-28-09 02:48 PM - Post#55019
In response to Takinoxy
Then left click it, let the pdf viewer load it, and then select the print or save-to-disk option.
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David Duckslammer
Active Member
Reg: 01-17-07
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05-28-09 03:05 PM - Post#55020
In response to David Duckslammer
If that doesn't work, contact me privately and we'll find another way to get it to you.
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hcm82us
Member
Loc: San Diego
Reg: 05-14-09
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06-04-09 11:48 PM - Post#55062
In response to David Duckslammer
I just wanted to thank you for pointing me to that article, it was excellent. I am due in Oct., I have given the article to my Dr., and will give it to baby's Dr. and to the genetic counselor. I feel like I know more than they do at this point. I enjoy and appreciate your posts and look forward to future ones...
Holly
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GuyWillie
Active Member
Loc: Bucks, England
Reg: 02-02-09
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06-10-09 01:54 PM - Post#55114
In response to David Duckslammer
Thanks for the research, I'm a 53 yr old XXY47(mosaic). Not sure if it will help my cause,but I'll try to pass it on to my surgery.
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aim65
Active Member
Loc: Spain
Reg: 01-16-09
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09-12-09 06:58 AM - Post#56838
In response to David Duckslammer
Thanks for the info David. Just downloaded the article, I'm sure it'll be useful for our little boy in the near future. x
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Bear874
New Member
Reg: 09-08-07
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09-21-09 02:40 AM - Post#57307
In response to David Duckslammer
Thank you for that article.
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David Duckslammer
Active Member
Reg: 01-17-07
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09-21-09 03:41 AM - Post#57312
In response to Bear874
Greetings, bear. You are most certainly welcome, and I hope it helps you out.
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Hazel
Active Member
Loc: South Coast of England
Reg: 04-03-07
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10-14-09 03:38 PM - Post#58075
In response to David Duckslammer
Please can you put the text on a Word document or similar? I can't seem to open the file
| The superior man is serious about what what lies in himself and does not desire what comes from Heaven. The inferior man neglects what is in himself and desires what comes from heaven - Xun Zi(300BC). |
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David Duckslammer
Active Member
Reg: 01-17-07
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10-14-09 03:50 PM - Post#58077
In response to Hazel
You aren't the first. Dunno why this is happening but if folks will send an email to the address given in my profile I can send the document back the same way.
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Joey
Active Member
Reg: 02-01-06
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10-15-09 05:35 PM - Post#58103
In response to David Duckslammer
Its probably due to the English net nanny 
| Don't walk in front of me, I may not follow; Don't walk behind me, I may not lead; Walk beside me, and just be my friend. |
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bluboy22
New Member
Reg: 10-15-09
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10-18-09 09:32 PM - Post#58178
In response to David Duckslammer
Thank you Duckslammer,
I am a parent of a newly diagnosed KS 11 year old son. I appreciate your help and this website.
bluboy22
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Just 47XXY
Active Member
Loc: Dublin. Ireland.
Reg: 04-12-06
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10-26-09 10:33 AM - Post#58346
In response to David Duckslammer
I am thinking most new doctors could be reading, on here now, if not, its a shame, as they could be learning a lot, from all our, case studies here now.
Anyway hope you are all well. 
I am living each new, day. As it comes.
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Shirley
Member
Reg: 12-09-09
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12-09-09 10:22 AM - Post#59240
In response to Just 47XXY
I'm brand new here. Thanks for posting this. I have printed it out and would be interested in talking to my doctor about freezing my 16 year old sons sperm (after testing).
Thanks again.
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Povl
Active Member
Loc: Cornwall, UK
Reg: 03-27-06
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01-01-10 07:14 AM - Post#59745
In response to David Duckslammer
Hi Duckslammer
Brilliant - at the KSA UK annual conference 2009 a Urologist consultant suggested similar knowledge - suggesting times are changing? However, he did point out that not all urologists agreed!
I shall certainly print off the article and hand to my GP (Doctor)
Cheers
Povl
www.ksa-uk.net
Don't know where to begin? Why not try out a Poll? They are completely annonymous |
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Ron St. Aubyn
Active Member
Loc: Louisiana, USA
Reg: 12-04-06
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01-25-10 07:10 PM - Post#60047
In response to Povl
I don't want to bust your bubble, however the article that Ducks recommends speaks about "Concepts..." and not actual procedures or practices but a general notion or idea of the future. There is an article from The Journal of Clinical Endocrinology & Metabolism Vol. 89, No 5 2263-2270 Copyright 2004 by The Endocrine Society: Klinefelter Syndrome In Adolescence: Onset of Puberty Is Associated with Accelerated Germ Cell Depletion. Hospital for Children and Adolescents, University of Helsinki
In conclusion,...Our results show that early adolescent boys with Klinefelter syndrome have testicular germ cells that display a maturational arrest at the level of spermatogonia. ..onset of puterty was associated with depletion of spermatogonia. ...it seems that early puberty does not provide a unique window of opportunity to increase fertility potential of subjects with Klinefelter syndrome.
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David Duckslammer
Active Member
Reg: 01-17-07
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01-25-10 07:45 PM - Post#60048
In response to Ron St. Aubyn
Dr Paduch's paper is 5 years newer than the Helsinki study. The field is rapidly evolving. Anyone interested in this should have their doctor find out the latest.
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sally callaghan
Member
Loc: waimate newzealand
Reg: 01-25-10
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01-26-10 06:12 AM - Post#60057
In response to David Duckslammer
kia ora ducks.thank u you for providing that information.ive printed it out.yay.im looking forward to hearing what my boys doc has to say about ks.thanks heaps.sal
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Ron St. Aubyn
Active Member
Loc: Louisiana, USA
Reg: 12-04-06
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01-29-10 05:51 PM - Post#60155
In response to Ron St. Aubyn
There is a published article from the University of Oklahoma Health Sciences Center & Oklahoma Medical Research Foundation, 2008 that Klinefelter syndrome 47,XXY was found in patients with systemic lupus erythematosus (SLE). The study was undertaken to investigate the prevalence of Klinefelter syndrome in a large population of patients with SLE thus encouraging that SLE can be a marker for undiagnosed XXY. And also, XXYs need to be diligent in seeking routine medical care.
Klinefelter syndrome (47,XXY) in male systemic lupus erythematosus patients: support for the notion of a gene-dose effect from the X chromosome. Arthritis Rheumatism, August 2008
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