XXY Movie

[kamododragon]

Hey ya,
have anyone of you seen the XXY movie and what do you think. Dose it do any good portraying us intersex people in a good light.

Here's the link to one of the reviews.
http://www.courant.com/entertainment/movies/hc-xxyrev.artaug29,0,1487120.story

[Kailana]

The movie is unique, but i really do not think that it portrays an accurate version of XXY, as that is Klinefelters, veryvery few are actually raised as girls, sometimes it happens but its rare, most are raised male, as that is the usually choice. XXY the film sort of makes it hard even for most XXY to identify with, it is a very unusual film, interesting perhaps, but definately not what I would consider normal for a XXY affected person.

In a way I really think the writer did not really do his/her research well, and just confused conditions to base the story of a girl who's a boy, supposedly with XXY chromosomes. I do know it happens, have heard of several people who were raised as girls who are XXY, some from parents who say there kids have been diagnosed XXY so I do tend to believe them, It is just very unusual for a XXY male to be raised female, and I would guess that the ambiguity at birth made it much easier for the doctors at the time to assume assigning as a girl would be better. <------that is actually very rare for XXY's.

Oh and I would watch the film, Think theres a few links somewhere a few months back about the film, if you really want to watch it. Should be able to find it in the XXY threads. And then judge for yourself how good it is. I am waiting for an english version so I can understand what is said rather then just going with whats on screen, it is not so easy to understand all the scenes.

good luck

[fraulein_Maria]

[QUOTE=Kailana;16727]The movie is unique, but i really do not think that it portrays an accurate version of XXY, as that is Klinefelters

>>> yes Kalaina... if you'd looked in the CAH forums, you'd know its a CAH story and that the producer was over-ruled on the title by the corp. execs.

sex sells, hence the title. i haven't seen it myself (yet!) but i have heard that its a very sensitive portrayal of an uncut XX-CAH... most likely praeder 5.

[Peter]

I saw the movie. In talking it over with other intersex people, there seems to be ageement that it does a pretty good job of exploring the emotional life of an intersex teenager, even if it is very confused about the biology. The uncut XX-CAH hypothesis is interesting, but it does not square with the intersex heroine engaging in a full stand-up pissing contest.

Peter

[Kailana]

even downloaded it, the problem is I do not know what is actually being said. It could be XXY, as I have heard from both parents and people affected that it was the doctors/surgouns who recommended assigning their kids as girls.

While that is not very common as I have stated before, I do know it has happened many times. I actually believe there are a whole lot of missinformed surgouns who just love cuttting and removing things, for no reason because they do not actually know what should be done. ie...leave the kids alone.

Maria's comments about her being a XX-CAH prader 5, in my opinion is very unlikely. PAIS would actually be better, lower grade, but honestly who knows. OR at least I sure don't cause what Maria mentioned about it being in the CAH threads, I read those and didn't catch any information from anyone with clout that mentioned XX-CAH as the condition. Oh and I could be wrong, I just don't recall.

[fraulein_Maria]

[QUOTE=Kailana;16732]OR at least I sure don't cause what Maria mentioned about it being in the CAH threads,

>>> no, i said, CAH forums... BLO has a CAH forum, but there are sites devoted exclusively to CAH. <<<

[fraulein_Maria]

[QUOTE=Peter;16730]I saw the movie. In talking it over with other intersex people, there seems to be ageement that it does a pretty good job of exploring the emotional life of an intersex teenager, even if it is very confused about the biology. The uncut XX-CAH hypothesis is interesting, but it does not square with the intersex heroine engaging in a full stand-up pissing contest.

>>> but an uncut praeder 5 could, if she wanted to ;) <<<

[kamododragon]

I would like to see the whole movie, but I got just the previews.

[Peter]

Thanks Maria for the information. I looked at the CARES site for more details on the CAH prader scale.

Peter

[fraulein_Maria]

[QUOTE=Peter;16737]Thanks Maria for the information. I looked at the CARES site for more details on the CAH prader scale.

>>> this is the best link i've seen on the subject. and they now have a great hypospadia page! <<<

http://www.sickkids.ca/childphysiology/cpwp/Genital/GenitalCAH.htm

[kamododragon]

So when is the movie coming out in the english version

[Peter]

I saw it in the SF Bay Area with English sub-titles.

Peter

[kamododragon]

I saw it in the SF Bay Area with English sub-titles.

Peter

How was it and are they coming out with a movie on DVD

[miriam]

Why the fuck would it be important what condition she has and what she has between her legs? Even people here seem to be more interested in the intersex condition than in the girl. :pissed-2:

It's a great story about a girl with an intersex condition and the people she has to deal with.

Groeten, Miriam

[Kailana]

cant help it, as all the information i've read says the girl has XXY chromosomes. But raised a girl, Fraulein-Maria's comment about her being CAH XX just didn't sit well with me. Wouldn't really go well either when the young lady stopped taking her pills. for HRT, not corticosteroid replacement. CAH is not mentioned in any of the directors or writers information on the film nor have i scene it mentioned in any reviews.


Oh and it was an interesting film. And no i don't have any links, apparently CC's link in the "In The News" doesn't take you to the video anymore. I am guessing it was probably removed.

[fraulein_Maria]

[QUOTE=miriam;16759]Why the fuck would it be important what condition she has

>>> Miriam, perhaps you are not interested in having a heroine with your condition, but i would like one.... for myself, and for my daughter whom i've left uncut. I may not live long enough to see her again, and i'd hoped that this might be something i could point her to. I've already gotton a book to show her on the subject that is a teen-romance as opposed to very dry impersonal facts... although i've collected a package of those too. <<<

Even people here seem to be more interested in the intersex condition than in the girl.

>>> i'm very interested in the girl... what little i know makes me want to know more... i want to see this film so that i don't have to buy the DVD on spec. hoping they did it right. Until then, i'm stuck with "professional" reviews that reveal very little. I was hoping for "spoiler" info, but even that's coming through the filter of other's biases ( we all have them, so i'm not saying this like its a bad thing... only that we need to be aware of them, lest they deceive us.) <<<

It's a great story about a girl with an intersex condition and the people she has to deal with.

>>> well that's chock full of data. i kinda assumed everything you said other than that its a great story.... i'd really like to know WHY you think so. <<<

[fraulein_Maria]

[QUOTE=Kailana;16761]cant help it, as all the information i've read says the girl has XXY chromosomes.

>>> where are you reading that? its in NONE of the reviews i've seen. <<<

[melonade]

I found this information, which appears generally considered to be true. Perhaps it's not impossible for the film XXY to be about a case of XXY?

Stella Walsh, orginally named Stanisława Walasiewicz, of the 1932 olympics. After her death in 1980, she was apparently found to be a hermaphrodite rather resembling the protagonist in XXY. The cause of Stella's hermaphrodism is believed to be XXY with early-embryonic XX/XY mosaicism, that early in development she spawned off XX and XY cell lines which developed into separate reproductive organs.

[miriam]

Why the fuck would it be important what condition she has

>>> Miriam, perhaps you are not interested in having a heroine with your condition, but i would like one.... for myself, and for my daughter whom i've left uncut. I may not live long enough to see her again, and i'd hoped that this might be something i could point her to. I've already gotton a book to show her on the subject that is a teen-romance as opposed to very dry impersonal facts... although i've collected a package of those too. <<<

Even people here seem to be more interested in the intersex condition than in the girl.

>>> i'm very interested in the girl... what little i know makes me want to know more... i want to see this film so that i don't have to buy the DVD on spec. hoping they did it right. Until then, i'm stuck with "professional" reviews that reveal very little. I was hoping for "spoiler" info, but even that's coming through the filter of other's biases ( we all have them, so i'm not saying this like its a bad thing... only that we need to be aware of them, lest they deceive us.) <<<

It's a great story about a girl with an intersex condition and the people she has to deal with.

>>> well that's chock full of data. i kinda assumed everything you said other than that its a great story.... i'd really like to know WHY you think so. <<<

Too bad for you, she has another condition. It's a 100% fictional intersex condition. But does that mean she can't be your heroine?

IMHO the movie is great because it is not about the intersex condition and it is not about what she has between her legs. It's a story about a girl who is happy the way she is. It's a story about other people who believe she can't be happy. It's a story about other people who are afraid for her being different.

In a way it's a story about me. I would have been happy if people would not have tried to 'help' me. And from that point of view it is a story about near all people with an intersex condition.

I've seen the film for at least nine times now because I've presented the introduction of XXY at several occasions. For at least two of those occasions I'm so proud that I want to mention them here: the Amnesty Film Festival 2008 and the 2008 meeting of the Dutch Klinefelter peer support group. On October 23 I will be doing that again in Brussels (Belgium) at the Festival van de Vrijheid/Festival de la Liberté (Freedom Festival). It takes me about 20 minutes the people what they are ging to see and why the condition and/or the genitalia of Alex are not important. So... if you want to come to Brussels... ;)

I guess the review in the NY Times gives a good impression of the movie. The comments of some of the people also give a good impression of what happens when people don't understand the real message of the movie.

http://movies.nytimes.com/2008/05/02/movies/02xxy.html

Groeten, Miriam

[Peter]

Hi Miriam,

I agree with you that Alex in the film "XXY" has a 100% fictional intersex condition. But why get angry when real intersex people speculate about how her fictional intersex condition relates to real intersex conditions, like the conditions that we have? It's not like we are invading a real person's privacy.

The script is strongest where it deals with the interactions between Alex and the people around her. The script handles secrecy and shame issues well. However, for me, the most emotionally believable scene in the film is when Alex's father visits a local FTM trans man, inquiring about what the future might hold for Alex. That scene felt real. I know that the film has an important educational message in conveying issues of shame and secrecy, but until such time as we have intersex people playing intersex roles on the screen, there will always be a "blackface" aspect to the performace, similar to white people playing black characters on stage. I grew up knowing I was intersex and the film did not really get what it means to be intersex. Like so many portrayals of intersex life, its heart was in the right place, but it did not feel real.
But I also appreciate that the movie did not sensationalize the issues when it had many opportunities to do so.


Peter

[melonade]

You mean that Stella Walsh was a 100 percent fictional person?

[The Female Eunuch]

Melonade wrote:he cause of Stella's hermaphrodism is believed to be XXY with early-embryonic XX/XY mosaicism, that early in development she spawned off XX and XY cell lines which developed into separate reproductive organs.

I thought XXY and XX/XY mosaicism were two completely different conditions. Aren't they?

[melonade]

Melonade wrote:

I thought XXY and XX/XY mosaicism were two completely different conditions. Aren't they?

It reads like a complicated subject. Some of the articles mentioning Stella Walsh say she was a XX/XY mosaic originating from an XXY. Other articles say she was a XX/XXY mosaic. Mosaicism and XXY are supposed to be two separate things that can happen in the same individual. Having XXY is supposed to make mosaicism more likely, because it's harder for three chromosomes to replicate accurately than just two. But statistics say there are a lot of XXY people, so from random chance there should be some with mosaicism added.

Someone with in-depth knowledge of Kleinfelter's would be helpful right about now. :thinking:

[Peter]

My understanding is that Stella Walsh was XX\XY mosaic. No where in the film does it say that Alex is XX\XY mosaic. So, if I say that Alex is fictional, then it does not follow that Stella Walsh is fictional. All of the people I know with Klinefelter's syndrome are outwardly male, and inwardly two-spirit. Their situation seems very different than the situation of Stella Walsh. I believe that the film title "XXY" was choosen for its ambiguity, not because the main character is XX\XY mosaic. (Not that it is impossible.) If there is anything that you can add to this discussion from your own experience, I look forward to hearing it.

Peter

[Kailana]

sorry but there are many many variations of Mosaicism, 47XXY ie Klinefelters is Klinefelters, but if there is an XXY/XO or XXY/XY, XXYY/XXY/XY those are all variations of Klinefelters, considered Klinefelters Mosaic Male, I believe the there is even an 49 XXXXY varriation that has been diagnosed and again Klinefelters was used as the final diagnosis because it most closely fit the condition.
guess what there are females too , because some moronic idiot Doctor chose Female for underdeveloped KS males, it happens, its rare but it happens. Fact is there are some parents who find out afterwards that their underdeveloped 47XXY boys were reassigned becuase the doctor didn't understand what klinefelters was, and without knowing proper treatment/what and how a KS male developes later at puberty a girl was made. Surprise surgery for no reason other then stupidity by a doctor.

Oh and back to the film, Maria, I've only read the reviews that came with CC's link, I do not recall anyone anywhere saying that the condition was fictional, what I remember was that the story was fictional, about a girl who was XXY, issues involved discover, stopping the HRT to repress the male hormones, rebellion against her raised gender, and self dicovery and acceptance. I do not recall the film ever mentioning a condition other then to suggest ambigous genitalia.

[Peter]

There may be many forms of Klinefelter Syndrome Mosaicism, but the XX\XY Mosaicism that Stella Walsh had is not one of them. None of the known Klinefelter Mosaicisms include the XX\XY Mosaicism.

From Wikipedia:

"The 48, XXYY (male) syndrome occurs 1 in 17,000 births and has traditionally been considered to be a variation of Klinefelter's syndrome. XXYY is no longer generally considered a variation of KS, although it has not yet been assigned an ICD-10 code.

Males with Klinefelter syndrome may have a mosaic 47,XXY/46,XY constitutional karyotype and varying degrees of spermatogenic failure. Mosaicism 47,XXY/46,XX with clinical features suggestive of Klinefelter syndrome is very rare. Thus far, only about 10 cases have been described in literature.[19]"

Peter

[kamododragon]

So how many forms of intersex are out their?

[Kailana]

ahh now XX/XY is chimerism and is not 47XXY nor a mosaic form of Klinefelteres.

The issue about the XXY in klinefelters the extra X, is what makes KS, XX/XY is two completely seperate karyotypes present. Now back to KS, its the extra X chromosomes that fit in with the KS symptoms, and up to 49XXXXY has been found.

but XX/XY or XX-XY is not the same, as XXXY, that stupid slash signify's a difference/change in genetics. Two seperate Karyotypes and not extra X chromosomes that are attached/translocated or whatever else can happen during cell replication.

Oh and Komodo, it has been reported that only 20% of all known intersexed conditions are diagnosable. The other 80% have not been identified as to the actual reason for the cuase of ambigous genitalia. That is some pretty crappy percents. And is likely why there are intersexed people who have diagnosis that don't quite fit with other people who have the same diagnosis. Which in it's own way, can lead to people assuming someone isn't intersexed because there may be issues one person is affected with that will not even fit the so called known diagnosis symptoms.

Now how in the world is anyone to know how many types of intersexd condition's exist when only 20% have an actually known reason/cause for the intersexed condition?

[EMW]

There are exactly 67.4 types of intersexed disorders.

:evil:

[Kailana]

cause I have yet to see anyone with any clout to put out a number, particularly as many that 80% cases of intersexed people who have no known cause. and how do you get a .4 ? is there a condition out there that is only a partial diagnosis?

[EMW]

cause I have yet to see anyone with any clout to put out a number, particularly as many that 80% cases of intersexed people who have no known cause. and how do you get a .4 ? is there a condition out there that is only a partial diagnosis?

I know for a fact that 67.4 is correct...how you ask...because I pulled it out of my ass!

ROTFL!!!

:evil:

EE (Evil Emily)

[fraulein_Maria]

[QUOTE=miriam;16772]Too bad for you, she has another condition. It's a 100% fictional intersex condition. But does that mean she can't be your heroine?

>>> LOL. of course she can :) I even look up to Steven Hawking, but i can't say i identify... :) well, we both have an interest in astro-physics, but that's about it.

there is a terrible dearth of positive role models for women who aren't white. Its gotton alot better for black women, but what of us Hispanics? though i speak german, i understand spanish because it was spoken in my home all my life... our lady of guadalupe was held up as the standard, but what woman can compete with the only virgin to get pregnant? <<<

It's a story about a girl who is happy the way she is. It's a story about other people who believe she can't be happy. It's a story about other people who are afraid for her being different.

In a way it's a story about me. I would have been happy if people would not have tried to 'help' me. And from that point of view it is a story about near all people with an intersex condition.

>>> can you rent it through Netflix? <<<

I've seen the film for at least nine times now because I've presented the introduction of XXY at several occasions. For at least two of those occasions I'm so proud that I want to mention them here: the Amnesty Film Festival 2008 and the 2008 meeting of the Dutch Klinefelter peer support group. On October 23 I will be doing that again in Brussels (Belgium) at the Festival van de Vrijheid/Festival de la Liberté (Freedom Festival). It takes me about 20 minutes the people what they are ging to see and why the condition and/or the genitalia of Alex are not important. So... if you want to come to Brussels... ;)

>>> if your paying for the tickets ;) i'm so broke from my last mis-adventure i raided my change jar to put gas in the car. :( <<<

[fraulein_Maria]

[QUOTE=Kailana;16780] stopping the HRT to repress the male hormones,


>>> as far as i know, the only IS condition in which androgen represents are prescribed routinely is CAH...and likely given her ethnicity.

if there is another such condition IS condition that causes androgen excess, i'm all ears...

[kamododragon]

I just like to know if their is an accurate count as to how many intersex conditions that are known.

As for the Movie, I support the Movie and it's a good way to teach people about being intersex and can be used to talk to people about intersex issues.

[Kailana]

Another important fact is that there are many doctors who won't acknowledge some condition's as fitting within what is called an intersexed condition. Think i've mentioned that several times. Oh and even other doctor's who will only acknowledge intersexed condition's if there is a Y chromosome somewhere in there, and other doctor's who will advise termination if a fetus is found to be intersexed or likely to be intersexed, oh and other doctor's who will advise adoption to parents of intersexed patients, and doctor's who will lie to parents to hide an intersexed condition.

Gee I wonder where all these doctors learned to treat intersexed people so differently. There must be a really really big comglomeration of Former Doctors who have passed down each of their own interpretations on what should be done when an intersexed patient is born.

Ever wonder why Doctors seem to be all screwed up. Doctor A teached Doctor B, Doctor B teaches Doctor C, and somewhere along the line Doctor D is just as much of an idiot as Doctor A was, and Doctor A has been dead for 40 years. Sorry that is a knock on doctors.

how much hate can an intersexed patient have against doctors?

Just enough to assume a person in a labcoat is a moron.

My apologies to people wearing lab coats, it's not your fault, I am not fond nor do I trust Doctors. That is a learned behavior doctors have reinforced over and over again.

[EMW]

My apologies to people wearing lab coats, it's not your fault, I am not fond nor do I trust Doctors. That is a learned behavior doctors have reinforced over and over again.

There are good doctors out there...you just have to find them. The responsibility is on ourselves at this point in our lives.

[kamododragon]

That's true. That's why it's the doctors that take the time and listen to what intersex people have to say are the ones we can trust.

[Peter]

A common estimate for the number of intersex conditions is about 75. I just read this at another intersex site:

"AIS is only one of about 75 different intersex conditions."

But Kailana is onto something, for less than 50% of XY intersex conditions have been genetically resolved. And I am sure that there are many other unresolved conditions.

As for the frequency of intersex conditions, I recommend visiting the ISNA website, where a table of the frequency of various intersex conditions is available in the FAQ section.

Peter

[Kailana]

problem is I have a whole lot of hate, and actually nearly lost my Endo, during one of my more angered outbursts, sort of like, I really really like her as she does treat me kindly, but thats pretty much only if I accept being treated as TRANS, Which I reject more then being assigned Male. And yes i know I am reassigning, but what good does it do, accepting a TS diagnoses, just to get help?

I have never gone to any doctor and said, hey I am TS MtF, drop some meds in my lap and i'll be happy.

Me, and this is important,
CAH, what is CAH?
Does that mean I might be XX rather then XY?
But what does XY/XO mean?
Testicular Cancer are you sure?
What are those lesions?
Whats in the syringe?
What happened to Friday?
Why am I hurting?
What did you do to me?
Bone marrow biopsy for what?
Are you sure my labs fit a luekemia diagnosis? i guess it's ok to do a bone marrow Biopsy. No I am not worried about it hurting, it's ok, I've lived with pain for 17 years most people would be on meds to cope with. I am currently waiting for my 1 year follow-up not sure if there doing another Bone-marrow biopsy this time yet, but it's likely as my WBC is now up to 20.5, I've been running at 18-18.5 for the last year and half, the 20.5 doesn't even worry me, why do you ask, because it like many other of my lab reports are incomplete or as incomplete as having an idiopathic WBC Disease, more nonsense in my opinion by doctors hiding information.

I appreciate all the help and crap in order to reassign, but I care far more about the past then I do the future, as it is the past that has totally screwed up my life. What kind of future is/are any of us gonna have if all the important people in our lives do not accept our pasts, and love us for who we are and not what we are.

[Kailana]

I live on Questions, and as those questions are based around medical problems I do care to have to put up with a doctor who will only treat me as a Transsexual patient.

I have more honor than to let someone else decide what I must do, what guidelines i must meet in order to get help with medical issues.

Oh and now I forgot why i even posted these last two comments in this thread,

EMW doctors are only helpfull if they actually try to help.

[Onnineko]

Kailana...

The sky is still sunny, most days, and when there's nothing else, walking, just to walk, is still a luxury we can afford. Sometimes I try to think and say, it could always be worse... and sometimes I do succeed in that thought, while the sun is warm. Make the best of it. :)

Onni

[kamododragon]

Just think, the next generation that is born intersex, is what were laying the foundation for.

[fraulein_Maria]

[QUOTE=Kailana;16794]

Just enough to assume a person in a labcoat is a moron.

>>> not everyone wearing a lab coat is a doctor... i wore one when i had a phlebotomy job... most med techs do. <<<

[melonade]

Everyone can use a heroine/hero. But I think they help us by exemplifying qualities and virtues, of everything we wish to be, more than just matching ourselves for details. Similarity may make it easier to empathize with them. But maybe similarity of spirit is more important than medical similarity? The best stories to tell are the ones that give every listener something they can keep.

[kamododragon]

I guess the movie is about us and seeing us in their light.

[CC]

I believe that the film title "XXY" was choosen for its ambiguity, not because the main character is XX\XY mosaic.

Hi Peter good to see you back in your stride although I suspect just like everyone else here,you have a life outside of here :)

What follows is a link to an interview with Lucia Puenzo (the director of XXY)

CWB: How much research was done on the subject before writing the scri pt?
LP: Months of research… I worked with doctors, geneticists, teachers, parents of children who were born with different diagnoses of intersexuality, and young adults who had or had not been operated when they were born. The time I lived in Paris, in the Cinéfondation, I contacted Alex Jurgen, a German intersex person who made a documentary of her life (Octopusalarm) in which, after of years of operations and taking hormones to become a man, Alex realizes he will never be merely a man or a woman.

The Interview (http://www.cinemawithoutborders.com/news/127/ARTICLE/1477/2008-02-20.html)

and this from Youtube (http://www.youtube.com/watch?v=ZOHAvllNoSo)

I should also mention,before the movie was released in North America,the director searched for an intersexed organization to view a screening before its official release,it seems none were available :( were it not for the intervention of Curtis Hinkle of OII we would all be none the wiser.

[CC]

Hello Miriam
I've seen the film for at least nine times now because I've presented the introduction of XXY at several occasions. For at least two of those occasions I'm so proud that I want to mention them here: the Amnesty Film Festival 2008 and the 2008 meeting of the Dutch Klinefelter peer support group. On October 23 I will be doing that again in Brussels (Belgium) at the Festival van de Vrijheid/Festival de la Liberté (Freedom Festival). It takes me about 20 minutes the people what they are ging to see and why the condition and/or the genitalia of Alex are not important. So... if you want to come to Brussels... ;)

you truly are a great ambassador to the intersex movement and I have personally directed many people in the Netherlands who, have contacted me through various medians,in search of understanding of their intersex condition.

I can see you have a passion for this movie,as do I

Groeten Canice

[roguekiwixxy]

A common estimate for the number of intersex conditions is about 75. I just read this at another intersex site:

"AIS is only one of about 75 different intersex conditions."

But Kailana is onto something, for less than 50% of XY intersex conditions have been genetically resolved. And I am sure that there are many other unresolved conditions.

As for the frequency of intersex conditions, I recommend visiting the ISNA website, where a table of the frequency of various intersex conditions is available in the FAQ section.

Peter

Helo Peter, so you're the boss, what's it lie being the boss?

Why do the available smilies keep changing?

When 'hermaphrodite' was the accepted terminology there were very few conditions that made the grade, now that the accepted terminology is 'Intersex' there are a whopping 75 that make the grade, maybe being naturally paranoid and suspicious is paying dividends here? :happy45: I don't believe it!

[roguekiwixxy]

Hey ya,
have anyone of you seen the XXY movie and what do you think. Dose it do any good portraying us intersex people in a good light.

Here's the link to one of the reviews.
http://www.courant.com/entertainment/movies/hc-xxyrev.artaug29,0,1487120.story


Movies are generally designed to make money, if it makes money it's a great movie, if it doesn't it's a usesless movie.

[kamododragon]

Movies are generally designed to make money, if it makes money it's a great movie, if it doesn't it's a usesless movie.

Only if it's represent right and give very accurate information.

[roguekiwixxy]

The movie is unique, but i really do not think that it portrays an accurate version of XXY, as that is Klinefelters, ...... normal for a XXY affected person.

It doesn't portray anythign like being XXY, but then it's a movie, not real life. Real life is much stranger than the movie. I know, I live it.
Oh and I'm not "affected" by XXY, I AM XXY.

[QUOTE]In a way I really think the writer did not really do his/her research well, and just confused conditions to base the story of a girl who's a boy, supposedly with XXY chromosomes.

No, there's no research done onthis one at all,l if they did and they wanted to portey an untreated XXY in teenage years they would have needed a skinny, emotionally crippled, breast bearing, pale looking male.
Then it would have been realistic.

I do know it happens, have heard of several people who were raised as girls who are XXY

I've never heard of that before and I collect unusual literature, so if you have the literature pass it on, I have a home for it.:o


It is just very unusual for a XXY male to be raised female, and I would guess that the ambiguity at birth made it much easier for the doctors at the time to assume assigning as a girl would be better.

I've never seen a reference in literature detailing ambiguous sexual develpmemnt in an XXY, I guess it's possible, just haven't seen it. And just because someone is XXY is not reason to assume no other genetic or developmental condition can't exist along with XXY, I know of 3 XXY's who have other congenital disorders as well.

Oh and I would watch the film, Think theres a few links somewhere a few months back about the film, if you really want to watch it. Should be able to find it in the XXY threads. And then judge for yourself how good it is. I am waiting for an english version so I can understand what is said rather then just going with whats on screen, it is not so easy to understand all the scenes.

Maybe if you paid me I'd watch it, but it would be a struggle not to constantly shout out, "wotta load of rubbish!" :o

[Kailana]

Cause me all i have to go off of is the parents who post questions about why there 47XXY boys were reassigned as girls. What they were told was that the small pee-sized testes, underdeveloped phallus would lead to a miserable life as a male child, and were instead castrated, reconstructed as girls, and it happens often enough, usually by doctors who do not understand that a person's gender is not based off of phallus size, nor how big or small their testes are.

And me, i did not question them at all, as I am sure they would not have asked nor have mentioned their kids at all, had they not been Dx'd as 47XXY in the first place. Those same parents were having a very hard time understanding why their kids doctors pushed for a female assignment when that is never mentioned for Klinefelters boys. Information is never even posted about the few who get reassigned as girls, because they are the odd ones out that don't fit the normal standard treatment guidelines for KS.

My big worry is that for someone like me, or others with knowledge of what doctors will actually do to anyone with unusual genitalia, is that we can't really say or explain to parents why their Kids were solo'd out, chosen for reassignment, when that is not standard treatment for the condition. What would or should I say?

What I did say/advise is to listen to their kids by the way, as they are the only ones who know what they actually are.

[fraulein_Maria]

[QUOTE=roguekiwixxy;17213][quote=Kailana;16727]The movie is unique, but i really do not think that it portrays an accurate version of XXY, as that is Klinefelters, ...... normal for a XXY affected person.

>>> though i haven't seen the movie, all the girl's symptoms, what she did about them, and her ethnicity point to a praeder 5 XX-CAH gal. I heard through the grapevine that the decision to call the movie XXY had nothing to do with her IS condition and everything to do with selling tickets.....

who's gonna buy tickets to see....

XX-CAH gal. praeder 5

the public knows nothing of that, nor wants to.

but "EVERYONE KNOWS" that XXY's are supposed to be she/males, and itsn't that wonderfully titilating....

and who cares as long as it gets the stupid public in the door long enough to see that its really not about sex or gender?

[roguekiwixxy]

Cause me all i have to go off of is the parents who post questions about why there 47XXY boys were reassigned as girls. What they were told was that the small pee-sized testes, underdeveloped phallus would lead to a miserable life as a male child, and were instead castrated, reconstructed as girls, and it happens often enough, usually by doctors who do not understand that a person's gender is not based off of phallus size, nor how big or small their testes are.

I understand what you're saying, but...ahem....XXY boys do not generally have a micropenis nor do they have tiny testes prior to puberty. This is part of the reason we don't get diagnosed early or at birth, we just don't look remarkably different to XY boys at birth. Now then this is the hard part, even though I know you want to believe everthing you've been told, some of it is nonsense. What you have described would be reported in the literature, doctors love doing that, reporting on the most unusual, it's what they do, so why isn't what you've described also described in literasture? I'm not saying it doesn't exist, but where is it? How often does it occur? I've never heard of it, never. But I don't know everything. If the type of development you've described was a regular event I'd have lots of information on it, because I do already have literature on all the regularly occurring developmental events in XXY's.



And me, i did not question them at all,

Then you should.


as I am sure they would not have asked nor have mentioned their kids at all, had they not been Dx'd as 47XXY in the first place.

I know of XXY adults who THIUNK they have a small penis BECAUSE the literature say so, but in reality they don't, they're average. Remember the original description of Klinefelter's was on 9 adults who were suffering hypogonadism, for god knows how long. Insufficient T does shrink the genitals.

So a well meaning doctor tells the parents of a newly dioagnosed XXY baby that he has a small penis and they believe it becasue a doctor says it, but all baby boys have a small penis if you've not noticed. XXY baby boys are no different to XY baby boys.

Those same parents were having a very hard time understanding why their kids doctors pushed for a female assignment when that is never mentioned for Klinefelters boys.

And I find it very difficult to believe it at all, because it's so rare it would be reported in litersature as a special event. I think you've been lied to, to put it bluntly.



Information is never even posted about the few who get reassigned as girls, because they are the odd ones out that don't fit the normal standard treatment guidelines for KS.


Nup, ther medical profession couldn't give a toss about those sorts of sensitivities, they would make a really big deal about it.

My big worry is that for someone like me, or others with knowledge of what doctors will actually do to anyone with unusual genitalia,

Which is where the argument falls apart, XXY baby boys look the same as XY baby boys.


What would or should I say?


You should refer them to me and I'll get them to see an eminent paediatric endocrinolgist anywhere in the world in a matter of days, no worries. The doctors I know have those kinds of contacts.

What I did say/advise is to listen to their kids by the way, as they are the only ones who know what they actually are.

One problemn here is that XXY's are very poor communicators, I very much doubt you could get a young XXY boy to express any notion of who he is in regsrds to gender. And by the time thery're in their teens they want to be like their peers, who happn to be other boys, usually.

[Kailana]

My only issue with your response is that you wrote that XXY boys look just like normal XY boys until puberty.

I Have a big issue over any comments that lump an entire group together as not everyone within a condition is gonna be exactly the same. their is always variation.

I also think it is rude, that you would assume a parent who is looking for answers is making up information about their children's surgical assignments. They were looking for understanding and for information about bringing up their now daughter's as happy kids. <---that is why I do care about what they wrote, that is what is important to me. I hope you would understand that just cause you had normal appearing male genitalia does not mean that ever person who is XXY is going too. I have heard to many stories from too many other people who are all XXY or their kids are XXY to question the dx of their children. There is and always will be variation within a condition.

[roguekiwixxy]

My only issue with your response is that you wrote that XXY boys look just like normal XY boys until puberty.

I Have a big issue over any comments that lump an entire group together as not everyone within a condition is gonna be exactly the same. their is always variation.


You do? Actually I said XXY boys look the same at birth as XY boys, which isn't 100% true, it might be 99.9% true for all you know, or me for that matter. But this is a discussion area not a scientific conference.
See I could say all XY boys look the same as all other XY boys at birth and we kinow that's not true, so give me a break. anybody can make an in=signigficant mnistake in terminology or expression, can't they. I did it in a concversation with Maria about hypogonadism prior to puberty without specifically mentioning XXY boys and we got over that slight misunderstanding. So I'm sure that is possible here too.

At puberty anything can happen from all hell breaking lose to nothing at all.

I also think it is rude, that you would assume a parent who is looking for answers is making up information

What you're referring to is a such a rare event, 3 possible cases so far in literature that I have found, so I can easily say 'almost all' or 'virtually all' but to make such a big deal over such a rare possiblity is almost pedantic.

When someone is referring to a conversation they had with some else who isn't there to back up that which is said, I question it. I don't like hearsay, which is what it is, hearsay.

about their children's surgical assignments. They were looking for understanding and for information about bringing up their now daughter's as happy kids.

And I tend to find people lkiie to exaggerate, lots, especially to get attention. I don't believe it just becasue you say it, I need evidence. Which has got nothing to do with youyr honesty, Im sure youy are relatijng what youy were told, I don't think you';re making anything up but I need evidence to beilve everything you say.

<---that is why I do care about what they wrote, that is what is important to me. I hope you would understand that just cause you had normal appearing male genitalia does not mean that ever person who is XXY is going too. I have heard to many stories from too many other people who are all XXY or their kids are XXY to question the dx of their children. There is and always will be variation within a condition.

And I don't think you should believe everything you hear just because it is said. You believe Turner males exist and it in nonsense, they do not exist, they never have, but you believe it, and nothing is going to change that.

So what other things do you believe that do not exist?

[Kailana]

are supressed memories from surgeries as infants/toddlers that pop up out of nowhere later in life, leaving long faded hidden scars that people were never aware of as kids, teens, young adults, but as they age and get older and skin thins, those long faded surgical scars appear again. Those brief nightmares that pop up, out of nowhere are long faded memories, glimpses of a childhood injuries and surgeries that the people have who were just to young to actually remember the cause for the dreams, scars that appear out of nowhere, that are well healed and do not appear to be done with rescent or current medical technology.

Turners Mosaic is just a variation Graeme within what is known as Turner's carrying an XO cell line. I only put Male on, because I was raised and reconstructed as a Male. Turners is a condition given to phenotypical Girls, what they appear as and not specifically whether they are XX. And just to remind you XO/XY or 45X/46XY Mosaicism is Turner's Mosaicism. A Turners Mosaic affected person can have a XY genotype as Turner's actually reflects having an XO or 45XO cell line present and it is the missinformation about being XX that is missleading and causes people to mistake people who are XO/XY for other conditions. Some of those same links provided by Miriam even describes the Mixed Gonadol Dysgenises as applying to Turner's Mosaic's, and you shouldn't claim to know what your talking about because when it comes to Turner's only 90% of Turner's affected diagnosed patients actually have dysgenetic gonads, the other 10% have fairly normal gonads, some might be smaller then normal, and some are fertile and perfectly capable of having children.

Last comment, a Turner's Mosaic Male is usually reassigned as a Turners Mosaic Female. What the medical doctors say is that if there are testes/ or streak gonads they are reccommended for removal, cancer being the main reason used to reassign as female. But what does that leave me as? I still have both gonadol sets. Repeated surgeries throughout my life, some many many years apart and i am still different, i will never meet anyones standards for a normal biological Male or for a normal biological Female, as I am niether male nor female, but mixed anatomically. I do not fit what is medically accepted as a Mixed Gonadol Dysgenises Dx, I do not fit a normal Turners Dx, but i do fit a Turner's Mosaic Dx who was born ambigous thought to be a girl, discovered wasn't exactly, has been reconstructed and raised male, and rejects the male surgical assignment. I am and always have been intersexed, always will be, and while you seem concentrated on putting people into a must fit this condition exactly as reported by doctors in medical literature, i am one of those people who have done enough research to know better and who knows that most medical literature only reports what is common to many condition's and ignores the variations because the variations do not fit the condition exactly, and the variations only have some symptoms to the condition and not all of them. Mosaicism just means variation is likely to happen within a condition, only some symptoms may be present rather then all or most of the symptoms that fit the condition.

Does that help anyone help them understand where I am coming from? Oh and actually i have another Dx of CAH, which could just as likely be causing some of my symptoms too. Or it could be likely that combination of CAH and XY/XO together just made for one interesting person with several different reasons for being not a normal Male or a normal female by definition of what a normal male or normal female is.

Your comment about 3 people being rare is just that rare, just cause they are rare doesn't mean they do not exist, otherwise I would not even be around at all as I am one of the few who are supposedly suppose to be one of the rarest person's on this planet, and I exist as one of the persons who is medical very rare but still exists.

[roguekiwixxy]

are supressed memories

[QUOTE]
Not interested in suppressed memories, it is twaddle...that's a new scientific term for 'nonsense'.


Turners Mosaic is just a variation Graeme within what is known as Turner's carrying an XO cell line.


I know.



I only put Male on, because I was raised and reconstructed as a Male.


And you are not a Turner, there is no Y in Turner,



Last comment, a Turner's Mosaic Male


There is no such thing as a male Turner, there never was and there never will be.


................

[CC]

Not quiet sure where it is you're going with this Graeme but,it seems to me you're implying all xxy's are male and ought to be raised as such :boohoo:
so why isn't what you've described also described in literasture? I'm not saying it doesn't exist, but where is it? How often does it occur? I've never heard of it, never.

Infrequently discussed in medical descriptions of KS are individuals’ concerns with gender expressions and feelings. An unknown percentage of persons who have KS experience androgynous or feminine feelings that can develop at an early age . Some people who have KS consider themselves to be transgendered, others considered themselves to be intersexed, and others considered themselves to be transsexual.

Wyler et al found that two of nine candidates that they recommended for transsexual surgery and female hormones had KS. A host of investigators similarly reported cases of men who had KS who transitioned to live as women or who harbored aspects of Gender Dysphoria . Walzer and Hurwitz concluded that all of the KS patients that they saw viewed their personalities as dual male and female and wrote: “Investigators periodically report they can find no increase in sexual deviancy in patients with a chromosomal abnormality. Only too often the methods used to ascertain the presence of such a deviation. . .are not conducive to discovering it.” We know of two relevant cases; one is a mathematics professor who underwent sex reassignment surgery to live as a woman and a previous medical student who is presently in the process of transition. The frequency of gender change in KS is unknown.

How individuals respond to their intersex conditions varies greatly. From the varieties of findings in the accumulated reports, it should not be anticipated that a person who has KS will fit any model or demonstrate any particular personality characteristics. Stereotyping those who have KS into homogeneous profiles should be resisted. As in other aspects of medicine, children and adolescents need to be dealt with as individuals.

[roguekiwixxy]

Not quiet sure where it is you're going with this Graeme but,it seems to me you're implying all xxy's are male and ought to be raised as such :boohoo:



If you wish to talk about yourself or about others you have factually and provavble knowledge of, feel free, but all this stuff about "I know of" or "I knew" or "I was told" or "I'm sure" is of no consequence to me. I'm only interested is provable FACTS.

As I've told Andre, when it was first suggested I was Interesex I was infuriated until I studied the matter and discovered I was indeed Intersex, then I rearanged my thinking.

That's because I am capable of rearranging my beliefs to suit the advancement of knowledge. I have discovered that most of the XXY's on XXYTALK, who actually participate, are completely incapable of rearranging their thinking to suit the advancement of knowledge.

So with me you have a really good chance of proving your point if your point is based on something a little more tangible than the information you've advanced so far. Which is why I've not quoted much of what you've imparted.

So a good argument for you now would be to bring along the parents of existing pubertal or pre-pubertal XXY boys who's sons have expressed a desire to not be raised as males. I will accept that as factual information.

[roguekiwixxy]

Stereotyping those who have KS into homogeneous profiles should be resisted. As in other aspects of medicine, children and adolescents need to be dealt with as individuals.


Also, if you go to:

http://s392.photobucket.com/albums/pp3/manmademan1/?start=0

You will find information that I have obviously read, and some it supports your argument, well some of your argument. I liike to explore all possibilities not just the ones I personally support.

Now, I have met a great many XXY and similar boys, and none to date have expressed to me, (and they follow me round like I was a god), any notion that they wish to be anything but men when they grow up, in fact many say they want to be like me, that's a nice compliment. And I think you'll find some pictures of some of them on Photobucket too.

So I'm not making anything up.

Also, if you want KS you have, I don't have it. Now are you going to alter the way you refer to all XXY's in your stereotypical fashion or respect others wishes?

[CC]

Are there any prepubertal or pubertal boys who've expressed a desire to be females?I can only vouch for xxy's as I know nothing of any boys

[roguekiwixxy]

I can only vouch for xxy's as I know nothing of any boys

In reality you can only vouch for yourself.

Now then nip along to Photobucket and read all about Need for Early Identification and Treatment and the Anorexia documents, actually they're all JPG images but quite readable.


And can you contact You Tube for me and ask why my video "Graeme's Testicles on You Tube" has been red flagged, you can't see my testicles but it's been there for weeks with no complaints, but as soon as I walk out on XXYTALK weird things hapopen, strange eh!

[roguekiwixxy]

Wyler et al found that two of nine candidates that they recommended for transsexual surgery and female hormones had KS.

I wonder what they would have decided if they didn't have KS?

I checked this information out and it dates back to 1976, got anything more recent?

[roguekiwixxy]

Wyler et al found that two of nine candidates that they recommended for transsexual surgery and female hormones had KS.

And do you ever wonder why it is that people have to priove to doctors what they want for thelselves?

I find it absolutely atrocious that adults have to go through a battery of tests to satisfy a doctor that they are who they say they are and then have to wait until some doctors says they're ready for reassignment surgery.

Here, even if you're XXY and don't want the balls you're born with getting them removed takes a helluva effort.

In England people who want reassignment surgery have to coinvice a Baord of Doctors and live as a member of the gfender they prefer before they can be considered for surgery.

So you can see I'm not opposed to all your ideas, just to the ideas that assume everyone could be the same. Oh, and I noticed you never did reply to my comment that just becaue people are gender confused, as quite a few XXY's tend to suffer from, that they all want to change their gender. I was gender confused, if you read my psychiatric introduction letter, but I decided I really do like being male.

[Dianne]

I find it absolutely atrocious that adults have to go through a battery of tests to satisfy a doctor that they are who they say they are .....

In Canada, in the 1960's and 70's, it was even worse. No matter what my medical condition, if it could not be concluded that surgery was necessary for physical reasons, doctors were afraid of the "mayhem law" which put them at risk if they removed "healthy tissue or organs" because of my legal status ("male"). It didn't matter that I was trying to end my life at 19 - that didn't count.

[fraulein_Maria]

[QUOTE=roguekiwixxy;17416]

Here, even if you're XXY and don't want the balls you're born with getting them removed takes a helluva effort.

>>> i've been musing on something and wonder if you can offer any insight...

It seems to me that all things being equal that, someone who is XXY...

Is about as likely to be XX+Y... as XY+X... at least at the level of there chromosomes, and perhaps as high as the receptor level.

Is this so?

[fraulein_Maria]

[QUOTE=roguekiwixxy;17416]

Here, even if you're XXY and don't want the balls you're born with getting them removed takes a helluva effort.

>>> i've been musing on something and wonder if you can offer any insight...

It seems to me that all things being equal that, someone who is XXY...

Is about as likely to be XX+Y... as XY+X... at least at the level of there chromosomes, and perhaps as high as the receptor level.

Is this so?

i was musing on it because of what i know happens to the human body when you have trisomy chromosomes elsewhere...

leaving aside retardation, my trisomy 21 clients are all very different physically... even more different from each other than those of different races.

some have heart problems and others have the hearts of athletes, among other things.

my theory of it, is that its not that "the" one extra chromosome is over-writing (inactivating) one of the others...

if that were so, there would be no problems at all.

But if we go further with the software analogy (the human genome being a trinary code instead of a binary one) its not two versions of windows competing for the same nutrients, but MAC and Windows, with a Linux kernal.

the only programs that will load without crashing everything are those programs common to all 3, the blue screen of death being quite literal.

in human sexual development, what would be common to all three (XXY) would be the default female pattern AND those genes for maleness that exist on the X... and some MUST be there too

or praeder 5 XX-CAH's would not be able to grow full-size phalluses, large empty scrotums, and in every way but atrophied wolffian structures (and fully developed mullerian structures) be male to the naked eye.

like an AIS'er your testis put out enough MIS to cause the atrophy of large structures, but i suspect that's were the similarity ends, because the AR gene obviously functions, and guides the process along well enough prenatally... though it may not function well at all thereafter..... perhaps XXY infants miss out on that week of post natal T. production that's as high as an adult males, that sets things up for the rest of ones life.

Because its mostly about timing.

T. shots after that first week post natally, may simply be a case of being too late.

[roguekiwixxy]

[quote=roguekiwixxy;17416]

Here, even if you're XXY and don't want the balls you're born with getting them removed takes a helluva effort.

>>> i've been musing on something and wonder if you can offer any insight...It seems to me that all things being equal that, someone who is XXY...Is about as likely to be XX+Y... as XY+X... at least at the level of there chromosomes, and perhaps as high as the receptor level. Is this so?


Well probably misquoting someone here, but when the cell ball that ends up a person is about 5000 in number the chromosomes splt repeatedly with whatever the chromosomal anomaly / abnormality happens to be present. Not even sure how relavant that is.....never mind.....persons who are normally born with a penis, scrotum and testes within are said to be male and are assumed to be XY karyotype, they're not assumend to be YX karyotype, beacuse that's not the way the alphabet works, well not the Latin alphabet anyway.



So, ummmm, it doesn't really matter which way it's expressed, that's just the traditional way of expressing chromosomal anomalies / abnormalities.

I didn't want my balls because they caused me a great deal of frequent pain that was made worse by the space the prostheses took up inside my scrotum. In England and America (possibly) the testes are routinely removed when prostheses are fitted, that's the system I wanted, but nothing to do with changing gender.

......................

[roguekiwixxy]

In Canada, in the 1960's and 70's, it was even worse. No matter what my medical condition, if it could not be concluded that surgery was necessary for physical reasons, doctors were afraid of the "mayhem law" which put them at risk if they removed "healthy tissue or organs" because of my legal status ("male"). It didn't matter that I was trying to end my life at 19 - that didn't count.


A the fact that I made frequent attempts on my life is what convinced at least one surgeon that I was serious and he determined to help me out, but I still didn't get the testes removed for many years later. As far as I'm concerned balls that do nothing, that migrate wherever they want, as if they hyad a mind of their own, are not 'healthy' and they certainly didn't make me 'healthy'. I don't know anything about 'mayhem law' but it sounds like 'silly law' to me.

[The Female Eunuch]

Fraulein Maria wrote:It seems to me that all things being equal that, someone who is XXY...

Is about as likely to be XX+Y... as XY+X... at least at the level of there chromosomes, and perhaps as high as the receptor level.

Is this so?

i was musing on it because of what i know happens to the human body when you have trisomy chromosomes elsewhere...

Interesting question. When you look into the details, it becomes more complicated.

Firstly, trisomy of the sex chromosomes is not comparable to trisomy of other chromosomes. The sex chromosomes have a phenomenon called lyonisation, which means that, if you have two X chromosomes, one of them switches off after a certain number of cell divisions, so that its genes no longer function. This means that, after that, an XX behaves the same as an XO, and an XXY behaves the same as an XY.

So the genes in a person with an XXY genotype will be doing the same thing as the genes in an XY person. The difference is that there were two X chromosomes functioning in the embryo before the lyonisation happened. So any characteristics of a person that are determined by things that happen in the embryo before that time will be as much XX as XY.

Kailana has mentioned an alternative theory of lyonisation, which, if true, might give different results. But she doesn't have enough information about it for me to work out what its effects would be.

cheers,
Caroline

[fraulein_Maria]

[QUOTE=The Female Eunuch;17439]Fraulein Maria wrote:

Interesting question. When you look into the details, it becomes more complicated.

>>> i thought it might, that's why i asked. <<<

Firstly, trisomy of the sex chromosomes is not comparable to trisomy of other chromosomes.

>>> true. the larger the chromosome, the more likely trisomy is to be fatal. trisomy 8's seldom live, but i got to see one. <<<

The sex chromosomes have a phenomenon called lyonisation, which means that, if you have two X chromosomes, one of them switches off after a certain number of cell divisions, so that its genes no longer function.

>> is this permamnent? <<<

This means that, after that, an XX behaves the same as an XO, and an XXY behaves the same as an XY.

>> for all time? i'm sorry, its just that we are learning that genes (particularly on chromosome 6... where 21 hydroxylase is among other things) that are supposedly inactive do have a function and do function under some circumstances... cancer and oncogenes are teaching us this. its still a very young science. a pharmacist friend of mine was out to sea on this stuff, so i recommended that she re-take general micro-bio..... because the texts have changed that much in just the last 5 years. <<<

So the genes in a person with an XXY genotype will be doing the same thing as the genes in an XY person. The difference is that there were two X chromosomes functioning in the embryo before the lyonisation happened. So any characteristics of a person that are determined by things that happen in the embryo before that time will be as much XX as XY.

>>> that's quite a bit though. what happens after is not really change so much as specialization and maturation. vaginal lips and facial lips look similar because they arise from the same tissue, and HAVE been used in reconstructive surgery interchangably. <<<

[roguekiwixxy]

Now I have to go out, first I got to get my testosteorne and my pills, then Im got to drop a couple of pills in the surgery 'casue that's what I do and I ran out yesterday. Then on this cold blusterly day bInhave to inject myself with my T or I'll pay for it, it'sget really cold and take even longer tom inject which isn just pain topped with pain. Taking T is not all it's cracked up to be!

Them the posts that have got me thinking will have had time to be thought through and I'll deliver a response, a hopefully well thought out response.

See Ya.

[CC]

And can you contact You Tube for me and ask why my video "Graeme's Testicles on You Tube" has been red flagged, you can't see my testicles but it's been there for weeks with no complaints, but as soon as I walk out on XXYTALK weird things hapopen, strange eh!

I'd say merely co-incidental .....just think why would anybody bother to do such a thing, after the horse had bolted.....doesn't make sense

[CC]

So a good argument for you now would be to bring along the parents of existing pubertal or pre-pubertal XXY boys who's sons have expressed a desire to not be raised as males. I will accept that as factual information.I know of one or two but,the chances of me bringing them anywhere are extremely remote

[roguekiwixxy]

I'd say merely co-incidental .....just think why would anybody bother to do such a thing, after the horse had bolted.....doesn't make sense

So I'm a horse now! :interesti Words sent to me indicate the gang of three are deliberating my future, they really should not be so full of themselves, I decide my future and the decision is made, I want nothing to do with XXYTALK, I have much better things to do.

But, some people can get a tad bit testy, (and do you know the word 'testy' is related to testicle?), over some of my videos, so it could just be a 'pre-emtive first strike', American's are noted for that in other spheres. :roll:

[CC]

Now are you going to alter the way you refer to all XXY's in your stereotypical fashion or respect others wishes?Are you perhaps confusing me with someone else as I don't seem to recall ever mentioning that xxy's were all the same,if anything I would have said there's a huge diversity amongst us.

[fraulein_Maria]

[QUOTE=roguekiwixxy;17462] so it could just be a 'pre-emtive first strike', American's are noted for that in other spheres.

>>> now now. not necessary to insult peaceful americans who didn't vote for the liar in chief, though i do understand the world's resentment. if you wish to insult these people without insulting all americans, just call them "REPUBLICANS"... its about the foulest word i can think of these days. <

[roguekiwixxy]

[quote=roguekiwixxy;17462] so it could just be a 'pre-emtive first strike', American's are noted for that in other spheres.

>>> now now. not necessary to insult peaceful americans who didn't vote for the liar in chief, though i do understand the world's resentment. if you wish to insult these people without insulting all americans, just call them "REPUBLICANS"... its about the foulest word i can think of these days. <

:roll: Oh gawd.......hahahahahahahhahahahahhahahahhahahahaha:roll:

[roguekiwixxy]

Are you perhaps confusing me with someone else as I don't seem to recall ever mentioning that xxy's were all the same,if anything I would have said there's a huge diversity amongst us.

Not at all Canice, you're exactly the person I'm referring to, since you regulaly prefer to refer to all XXY's as having Ks, which is a 'stereotype', not all XXY's have Ks.

[CC]

Not at all Canice, you're exactly the person I'm referring to, since you regulaly prefer to refer to all XXY's as having Ks, which is a 'stereotype', not all XXY's have Ks.

Why did I think you were talking of something else :roll: Okay,I'm with you on that one,not all xxy's have Klinefelters Syndrome.....are you happy now :nerd:

[Kailana]

the whole point of having a Genetic Chomosomal variation of XXY thats 47XXY karyotype is in fact Klinefelters Syndrome. If you have a problem with having a KS diagnosis maybe you shouldn't mention having XXY as your genotype.

AM I HEARING DENIAL?

You would do well to accept yourself first hun before you go bashing people for understanding that a XXY genotype is infact KLINEFELTERS SYNDROME.

[roguekiwixxy]

Why did I think you were talking of something else :roll: Okay,I'm with you on that one,not all xxy's have Klinefelters Syndrome.....are you happy now :nerd:

Thank you Canice, I knew I could reason with you, yes I am happy. Thank you for asking.

[CC]

Kailana

XXY is something we are born with while,Klinefelters Syndrome is something we may, or may not develop in later life

[Kailana]

is Graeme not taking T to make up for what his testes are not making? Does that not then me he is affected by Klinefelters Syndrome? I would ask Graeme myself but I am not going to bother to listen to him anymore. All I see is a Grown adult, that is acting like a child, which I am sure I have done on several occastions. But at least I can admit when i am wrong. He has not learned that ability yet.

And again I will ask, if he wasn't affected by 47XXY Klinefelters Syndrome, he would not be on T. <----That is denial, CC and I bet that Graeme doesn't have the balls to admit hes acting like an idiot right now.

[CC]

:neutral:

[roguekiwixxy]

the whole point of having a Genetic Chomosomal variation of XXY thats 47XXY karyotype is in fact Klinefelters Syndrome. If you have a problem with having a KS diagnosis maybe you shouldn't mention having XXY as your genotype. AM I HEARING DENIAL? You would do well to accept yourself first hun before you go bashing people for understanding that a XXY genotype is infact KLINEFELTERS SYNDROME.


Well, Hun, this is not the only topic you're confused over. Telling the truth is not 'bashing' it's called 'education' And it seems to me you don't like being educated, no worries, no skin off my nose as they say.

Some why is it you want to find things you don't understand to argue about? Surely the most logical thing for yon to domis argue about something you know about?

Here's a good idea for you, since I'm such a nice guy, try this, it's not too complicated, you should not have a problem:

"Sex Chromosome Abnormalities Found Among 34,910 Newborn Children: Results From a 13 (THIRTEEN) YEAR Incidence Study in Arhus, Denmark.
Nielsen et al


Then google Dr Shirley Ratcliffe and get her 2008 report on people with SCA's. Ratcliffe et al

Then go get the Denver "Study Psychological Competence of Unselected Young Adults with Sex Chromosome Abnormalities" Bender et al.

Then combine the three sets of results and you knowledge of what having an SCA is all about, and will be much more enlightened. And be sure to note all the incidences of 'Turner Mosaic Males', which I'm sure you'll find fascinating.

So off you go deary, came back when you're educated.

[kamododragon]

I understand what you're saying, but...ahem....XXY boys do not generally have a micropenis nor do they have tiny testes prior to puberty. This is part of the reason we don't get diagnosed early or at birth, we just don't look remarkably different to XY boys at birth. Now then this is the hard part, even though I know you want to believe everthing you've been told, some of it is nonsense. What you have described would be reported in the literature, doctors love doing that, reporting on the most unusual, it's what they do, so why isn't what you've described also described in literasture? I'm not saying it doesn't exist, but where is it? How often does it occur? I've never heard of it, never. But I don't know everything. If the type of development you've described was a regular event I'd have lots of information on it, because I do already have literature on all the regularly occurring developmental events in XXY's.




Then you should.




I know of XXY adults who THIUNK they have a small penis BECAUSE the literature say so, but in reality they don't, they're average. Remember the original description of Klinefelter's was on 9 adults who were suffering hypogonadism, for god knows how long. Insufficient T does shrink the genitals.

So a well meaning doctor tells the parents of a newly dioagnosed XXY baby that he has a small penis and they believe it becasue a doctor says it, but all baby boys have a small penis if you've not noticed. XXY baby boys are no different to XY baby boys.



And I find it very difficult to believe it at all, because it's so rare it would be reported in litersature as a special event. I think you've been lied to, to put it bluntly.




Nup, ther medical profession couldn't give a toss about those sorts of sensitivities, they would make a really big deal about it.



Which is where the argument falls apart, XXY baby boys look the same as XY baby boys.



You should refer them to me and I'll get them to see an eminent paediatric endocrinolgist anywhere in the world in a matter of days, no worries. The doctors I know have those kinds of contacts.



One problemn here is that XXY's are very poor communicators, I very much doubt you could get a young XXY boy to express any notion of who he is in regsrds to gender. And by the time thery're in their teens they want to be like their peers, who happn to be other boys, usually.

Their is one place in Mass, that doing research and it's at the Mass General Hospital's REU clinic. Here's their link
http://www.massgeneral.org/reproendo/index.htm
They work with the Harvard medical college and the Boston University medical college.

Their is one doctor that is doing intersex research and her name is
Dr. Stephanie Seminara. She is very knowledgeable about intersex conditions and she can be helpful in getting treatment guidelines for your endo. I have met Dr. Stephanie Seminara and she is very good to work with.

[The Female Eunuch]

CC wrote:XXY is something we are born with while,Klinefelters Syndrome is something we may, or may not develop in later life

Thanks for your simple, clear answer, CC. If more people attempted to respond simply and clearly like that, I think we would have less discord.

cheers,
Caroline

[kamododragon]

an on going research at the Mass general hospital REU clinic

3) Harvard Reproductive Endocrine Science Center
William F. Crowley (PI)
Project Number: U54 HD28138
Source: NIH
Period: 4/1/2005-3/31/2010

The Harvard Center was organized 16 years ago by the PI when NICHD first opened the Centers process to competition. From its inception, its scientific goals have strongly reflected its location within Harvard’s academic health center and its strong focus on two evolving themes - human investigation and genetics. FIve years ago our Center dramatically shifted its research focus upon recognizing the opportunity the Human Genome Project would provide for investigation in human reproduction. We also appreciated the unusual opportunity our patients with Idiopathic Hypogonadotropic Hypogonadism (IHH) and Kallmann’s Syndrome (KS) offered. These two disorders have in common GnRH deficiency. Together, this confluence of opportunities presented us with the potential to gain unusual insights into GnRH physiology. Thus, we married these two themes in hopes of providing fundamental insights into the genetic control of GnRH secretion in the human.
Despite GnRH’s acknowledged centrality to reproductive integrity, understanding of the genetic basis of its physiologic control in any species has been elusive. In part, this problem has been because such a high degree of species specificity characterizes its regulatory control. Whereas lower animals rely heavily on pheromones and light dark cycles to synchronize GnRH secretion and reproduction, both are severely attenuated in humans. Thus, across evolution homo sapiens has presumably utilized several different genes or ensembles to modify GnRH secretion as part of its reproductive strategies to adapt and evolve. Specific knowledge of these genes remains one of the great mysteries of biology.
This proposal represents the fruits of this marriage of our unique populations with new genetic approaches. It specifically focuses on 2 novel receptor genes critical to the control of GnRH physiology in the human that our Center’s Investigators and others have identified to cause IHH and KS during this past grant cycle - GPR54, Kiss1, and FGFR1. We have assembled a multidisciplinary team that has demonstrated that: a) mutations in either of these 3 genes cause IHH and KS, conditions which cause infertility in both men and women; b) the breadth of the phenotypic spectrum of these mutations and their full biology within the reproductive system is not fully described; c) their genetics is complex and strongly suggests interactions with other, yet-to-be discovered other genes such as the ligands for these receptors; and d) these genes also play important biological roles in several non-reproductive systems.
Our Center has fulfilled another of NICHD’s programmatic goal in that it has attracted and trained new investigators into this field whose techniques address these problems.

10) Establishing the Genetic Etiology for Kallmann Syndrome
Stephanie Seminara, M.D. (PI)
Project Number: 5 R01 HD43341
Source: NIH/NICHD
Period: 04/01/03-08/31/09

In all mammalian species, gonadotropin-releasing hormone (GnRH) is the first hormone in a complex reproductive cascade. GnRH is released by the hypothalamus and stimulates the secretion of luteinizing hormone (LH) and follicle stimulating hormone (FSH) from the pituitary; these gonadotropins then stimulate the gonads to produce sex steroids and follicles/sperm. The actions of GnRH are complex--it is secreted in a pulsatile, as opposed to constitutive, fashion, and a variable frequencies throughout the reproductive cycle. Understanding what signals modulate the developmental fate and secretory actions of GnRH neurons remains a major question for reproductive biologists.

This grant addresses this issue using a human disease model in which GnRH secretion is defective or absent. Patients with this condition, idiopathic hypogonadotropic hypogonadism (IHH), fail to undergo puberty and are infertile if untreated. Although congenital IHH is a rare disease and family sizes are typically small, a large inbred family of French Canadian descent has been identified with IHH and anosmia. A genome-wide scan has been performed and a chromosomal locus for the genetic defect has been identified. In this proposal, the candidate region will be further refined, a complete transcript map for the region will be developed, and RT-PCR will be used to screen the candidate gene for the precise genetic mutation. The mutation spectrum will then be juxtaposed against the baseline clinical/biochemical features of the patients, their neuroendocrine phenotypes, as well as their responses to physiologic replacement with exogenous pulsatile GnRH to develop robust genotype/phenotype correlations. The spatiotemporal pattern of expression of the gene will be studied and in vitro model systems developed to study the phyysiology of the newly-identified gene. It is hoped that this information will ultimately be used to understand numerous human diseases defined by abnormalities in GnRH secretion, including constitutional delay of puberty, hypothalamic amenorrhea, and central precocious puberty.

http://www.massgeneral.org/reproendo/pages/reu_currentresearch.htm

[roguekiwixxy]

:neutral:


A set of traits indicating disease:

Question: If the traits do not exist in an individual, does the syndrome exist in that individual?

The Traits of Klinefelter's syndrome are:

Adult
Over 6' tall
Gynecomastia
Elevated LH
Elevated FSH
Low Normal Testosterone
Female Fat Distribution
Female Pattern Pubic Hair
Small Testes consisting of Seminiferous Tubule Dysgenesis construction
Infertile (Azoospermia)
Osteoporosis

Of those traits I had...................2

The Traits I have today are.....................0

I do not have Klinefelter's syndrome.

Is Testosterone only used to treat hypogonadism? No.

Is Testosterone only used in men with Klinefelter's syndrome? No.

Now if members of this forum wish to continue to be deliberately ignorant, so be it.

[roguekiwixxy]

Their is one place in Mass, .

No, this is what you will do if you want me to engage you in conversation.

You will go do your studies, learn whatever you like, then you post your knowledge on what you learned here, then we'll discuss it. I'm not interested in your links with your few words of what you want to be understood.

Your're going to have to use your brain Nick, not someone elses.

[roguekiwixxy]

CC wrote:

Thanks for your simple, clear answer, CC. If more people attempted to respond simply and clearly like that, I think we would have less discord.

cheers,
Caroline

Yes that's an excellent response, and I believe I've mentioned it from time to time everywhere I go.

[kamododragon]

No, this is what you will do if you want me to engage you in conversation.

You will go do your studies, learn whatever you like, then you post your knowledge on what you learned here, then we'll discuss it. I'm not interested in your links with your few words of what you want to be understood.

Your're going to have to use your brain Nick, not someone elses.

I actually met the Dr at the Mass General Hospital who's heading up the intersex and KS research their. All their Doctors their do teach as well at the Harvard Medical college in Cambridge, Mass.

I was once sent their by my endo, to get treatment evaluations and treatment guidelines set forth by them. Those people their know their stuff more than any endo out their and I hear that all their endos, send their Patients to the REU clinic for evaluations, testing an treatment guidelines for the home endos to use.

I keep up with what ever research that the Mass General Hospital REU clinic puts out and they are on the cutting edge of the intersex and KS research. So they are way smarter that what your New Zealand health care can do for you, But at least I have the full research capabilities of Harvard University, Yale University and Brown University.

[roguekiwixxy]

All their Doctors their do teach as well at the Harvard Medical college in Cambridge, Mass.

I was once sent their by my endo.

Now see what I've done? I've eliminated all your unfounded inflammatory remarks. Get used to it, I don't take bait. I'm very interested in what you have to say about yourself Nick, so please do continue.

So why did your endo sent you there?

[roguekiwixxy]

A set of traits indicating disease:

Question: If the traits do not exist in an individual, does the syndrome exist in that individual?

The Traits of Klinefelter's syndrome are:

Adult
Over 6' tall
Gynecomastia
Elevated LH
Elevated FSH
Low Normal Testosterone
Female Fat Distribution
Female Pattern Pubic Hair
Small Testes consisting of Seminiferous Tubule Dysgenesis construction
Infertile (Azoospermia)
Osteoporosis

Of those traits I had...................5
The Traits I have today are.....................0

I do not have Klinefelter's syndrome.

Is Testosterone only used to treat hypogonadism? No.

Is Testosterone only used in men with Klinefelter's syndrome? No.

Now if members of this forum wish to continue to be deliberately ignorant, so be it.
........................

[OkieDokie]

Actually you had .... 6
And you still have .... 4
The two that have seemingly vanished are merely hidden by cosmetic surgery. Not cured, just hidden.

Of the other four, one is untreatable by any means, and three are temporarily hidden by hormone treatment.

Nothing is cured, only hidden.

What I have always found curious is your reasons to deny having any of this even though you do have all of it but have merely hidden it cosmetically.

I drive a Nissan Enema. If I paint it a different colour, I may hide the scratches but it is still a Nissan Enema.

[roguekiwixxy]

Actually you had .... 6
And you still have .... 4 The two that have seemingly vanished are merely hidden by cosmetic surgery. Not cured, just hidden. Of the other four, one is untreatable by any means, and three are temporarily hidden by hormone treatment. Nothing is cured, only hidden. What I have always found curious is your reasons to deny having any of this even though you do have all of it but have merely hidden it cosmetically. I drive a Nissan Enema. If I paint it a different colour, I may hide the scratches but it is still a Nissan Enema.

Do I have gynecomastia, no....surgically removed.
Do I have tiny testes, no....no balls at all actually, that's two down.
Elevated LH, no
Elevated FSH, no
Low Normal T, no, above average to high is where I'm at.
Over 6' tall.......never been 6' let alone over 6'
Female fat distribution, no....apparently I'm skinny
Female pattern Pubic hair, no
One I missed, never entered my head, small Penis, no...it's bloody huge
Another one I missed, Underdeveloped Scrotum, yes
Infertile, no......I'm sterile
Osteoporosis, no
I wonder is soft downy pubic hair is a feature of KS or of my brand of XXY?
You drive an enema? That must be fun!!!! :brick:

(Body hair....got a nice grade 4 over most of my body, male pattern, and I love it.)

What else do I have that someone with KS should or could have?

[OkieDokie]

Nothing is cured, only hidden.

[kamododragon]

Now see what I've done? I've eliminated all your unfounded inflammatory remarks. Get used to it, I don't take bait. I'm very interested in what you have to say about yourself Nick, so please do continue.

So why did your endo sent you there?

because the Massachusetts General Hospital in Boston, Mass is on the forefront of KS and intersex research and they are affiliated with the Harvard University and Harvard Medical college. My Endo sent me their so they can see what treatment my Endo can do and what the Massachusetts General Hospital Reproductive Endocrinology Unit can do to help my Endo out. All their doctors are Harvard Medical college professors and research scientist. One of the studies they do is frequent blood sampling where you are at the hospital and they draw your blood for 24 hours and get a 24 hour hormone level check. That includes taking readings on LH, FSH, Progesterone and Testosterone free and total.

They are constantly doing KS and intersex research. They have been known to get someone with KS and intersex to reproduce and they are experimenting with the GnRH Pump therapy to induce male and female reproduction. I know one of the doctors their and her name is Stephanie Seminara, MD.

[roguekiwixxy]

because the Massachusetts General Hospital in Boston, Mass is on the forefront of KS and intersex

[quote]
KS can be Karpoi's Sarcoma
or
Kallmann's syndrome
or
Klinefelrter's syndrome
or
Kiddies Sandwiches


So, which one is it? And how does it relate to why you were sent there by someone who could easily have done the other tests you mentioned?

Hey I can drawer my own blood and take it to my local lab to measure LH etc....don't need a fancy hospital for that.


They are constantly doing KS and intersex research.


Really, fascinating, personally I prefer longitudal studies over years, from birth to adulthood on all types of SCA's, got any reports from this hospital doing all this ongoing research?


I know one of the doctors their and her name is Stephanie Seminara, MD.


You do, and what is your association with Stephanie?

[OkieDokie]

because the Massachusetts General Hospital in Boston, Mass is on the forefront of KS and intersex research and they are affiliated with the Harvard University and Harvard Medical college.
Just curious nicky, why are your doctors sending you to Klinefelter Syndrome specialists to treat Kallman Syndrome?

And to think you are in the health care field. Don't they teach you anything in school? Google is your friend. Would you like me to explain the difference? Looks like I know more about it than you do.

BTW is it true all Kallman Syndrome males have micropenis? That's what the wikipedia says. Just wondering.

Oh, and hey - that porn link off your blog is interesting. How much do they pay you to promote sexual exploitation of women?

[roguekiwixxy]

Just curious nicky, why are your doctors sending you to Klinefelter Syndrome specialists to treat Kallman Syndrome?

It's all hypogonadism surely? Of course I no longer have hypo gonads more like hyper gonads.....I lied...hyper prostheses! :wink:

Wasn't Stephanie someone assciated with KS&A years ago?

[OkieDokie]

Nah, she's just the receptionist he flirts with. Wonder if she knows anything about micropenis?

[kamododragon]

Just curious nicky, why are your doctors sending you to Klinefelter Syndrome specialists to treat Kallman Syndrome?

And to think you are in the health care field. Don't they teach you anything in school? Google is your friend. Would you like me to explain the difference? Looks like I know more about it than you do.

BTW is it true all Kallman Syndrome males have micropenis? That's what the wikipedia says. Just wondering.

Oh, and hey - that porn link off your blog is interesting. How much do they pay you to promote sexual exploitation of women?

That's because they are doing both research concurrently. It's obvious that you don't have the brain power to figure that out. It's obvious that your so clueless and so dumb. It's no wonder why you were never able to get in on all the KS and intersex research and your still on your needle treatments. Oh and btw, I'm calling you out as a poser here. I don't think your intersex in here.

[kamododragon]

[quote=kamododragon;17540]because the Massachusetts General Hospital in Boston, Mass is on the forefront of KS and intersex



They are constantly doing KS and intersex research.



I know one of the doctors their and her name is Stephanie Seminara, MD.

Stephanie Seminara, MD is a Doctor at the Mass General Hospital. She's a endocrinologist and a research scientist for Mass General Hospital. She's a medical doctor and is well known in KS and intersex community and a very respected KS and intersex researcher.

Here's research proof
http://www.mgh.harvard.edu/reproendo/pages/reu_currentresearch.htm#3
Harvard Reproductive Endocrine Science Center
William F. Crowley (PI)
Project Number: U54 HD28138
Source: NIH
Period: 4/1/2005-3/31/2010

The Harvard Center was organized 16 years ago by the PI when NICHD first opened the Centers process to competition. From its inception, its scientific goals have strongly reflected its location within Harvard’s academic health center and its strong focus on two evolving themes - human investigation and genetics. FIve years ago our Center dramatically shifted its research focus upon recognizing the opportunity the Human Genome Project would provide for investigation in human reproduction. We also appreciated the unusual opportunity our patients with Idiopathic Hypogonadotropic Hypogonadism (IHH) and Kallmann’s Syndrome (KS) offered. These two disorders have in common GnRH deficiency. Together, this confluence of opportunities presented us with the potential to gain unusual insights into GnRH physiology. Thus, we married these two themes in hopes of providing fundamental insights into the genetic control of GnRH secretion in the human.
Despite GnRH’s acknowledged centrality to reproductive integrity, understanding of the genetic basis of its physiologic control in any species has been elusive. In part, this problem has been because such a high degree of species specificity characterizes its regulatory control. Whereas lower animals rely heavily on pheromones and light dark cycles to synchronize GnRH secretion and reproduction, both are severely attenuated in humans. Thus, across evolution homo sapiens has presumably utilized several different genes or ensembles to modify GnRH secretion as part of its reproductive strategies to adapt and evolve. Specific knowledge of these genes remains one of the great mysteries of biology.
This proposal represents the fruits of this marriage of our unique populations with new genetic approaches. It specifically focuses on 2 novel receptor genes critical to the control of GnRH physiology in the human that our Center’s Investigators and others have identified to cause IHH and KS during this past grant cycle - GPR54, Kiss1, and FGFR1. We have assembled a multidisciplinary team that has demonstrated that: a) mutations in either of these 3 genes cause IHH and KS, conditions which cause infertility in both men and women; b) the breadth of the phenotypic spectrum of these mutations and their full biology within the reproductive system is not fully described; c) their genetics is complex and strongly suggests interactions with other, yet-to-be discovered other genes such as the ligands for these receptors; and d) these genes also play important biological roles in several non-reproductive systems.
Our Center has fulfilled another of NICHD’s programmatic goal in that it has attracted and trained new investigators into this field whose techniques address these problems.

Establishing the Genetic Etiology for Kallmann Syndrome
Stephanie Seminara, M.D. (PI)
Project Number: 5 R01 HD43341
Source: NIH/NICHD
Period: 04/01/03-08/31/09

In all mammalian species, gonadotropin-releasing hormone (GnRH) is the first hormone in a complex reproductive cascade. GnRH is released by the hypothalamus and stimulates the secretion of luteinizing hormone (LH) and follicle stimulating hormone (FSH) from the pituitary; these gonadotropins then stimulate the gonads to produce sex steroids and follicles/sperm. The actions of GnRH are complex--it is secreted in a pulsatile, as opposed to constitutive, fashion, and a variable frequencies throughout the reproductive cycle. Understanding what signals modulate the developmental fate and secretory actions of GnRH neurons remains a major question for reproductive biologists.

This grant addresses this issue using a human disease model in which GnRH secretion is defective or absent. Patients with this condition, idiopathic hypogonadotropic hypogonadism (IHH), fail to undergo puberty and are infertile if untreated. Although congenital IHH is a rare disease and family sizes are typically small, a large inbred family of French Canadian descent has been identified with IHH and anosmia. A genome-wide scan has been performed and a chromosomal locus for the genetic defect has been identified. In this proposal, the candidate region will be further refined, a complete transcript map for the region will be developed, and RT-PCR will be used to screen the candidate gene for the precise genetic mutation. The mutation spectrum will then be juxtaposed against the baseline clinical/biochemical features of the patients, their neuroendocrine phenotypes, as well as their responses to physiologic replacement with exogenous pulsatile GnRH to develop robust genotype/phenotype correlations. The spatiotemporal pattern of expression of the gene will be studied and in vitro model systems developed to study the phyysiology of the newly-identified gene. It is hoped that this information will ultimately be used to understand numerous human diseases defined by abnormalities in GnRH secretion, including constitutional delay of puberty, hypothalamic amenorrhea, and central precocious puberty.

Have you ever heard of the frequent blood sampling study. It's a 24 hour study where they draw your blood for 24 hours. It's obvious you never heard of it and your so clueless.

[roguekiwixxy]

I don't think your intersex in here.

Well, I love to back up my mate, there is not doubt in my mind, having met the guy over several days, he is Intersex, no worries at all.

Unless he's changed his mind?

So why did you doctor send you tio that hospital?

[roguekiwixxy]

Stephanie Seminara, MD is a Doctor at the Mass General Hospital.

Have you ever heard of the frequent blood sampling study. It's a 24 hour study where they draw your blood for 24 hours.


We know who she is, we want to know, as you raised the subject, why your doctor sent you to that hospital when the tests you say you had done can be done anywhere.

I would definitely want to know why some one might want bloods from me over a 24 hour period when it takes days to get a result. Is that what happened to you? If so, why?

[kamododragon]

So why did you doctor send you tio that hospital?

Why do you ask, is because my doctor wanted to find out is their any better way to treat KS and what treatments that my Endo can use based on their research and what they did on the study.

[kamododragon]

We know who she is, we want to know, as you raised the subject, why your doctor sent you to that hospital when the tests you say you had done can be done anywhere.

I would definitely want to know why some one might want bloods from me over a 24 hour period when it takes days to get a result. Is that what happened to you? If so, why?

It's because they want to see what the hormone level looks like over a 24 hour period. That means every hour they take blood samples to see what the level of hormones are.

[roguekiwixxy]

Why do you ask, is because my doctor wanted to find out is their any better way to treat KS and what treatments that my Endo can use based on their research and what they did on the study.

I'm asking because you raised the topic without any explanation.

Kallmann's can be treated by any Endocrinologist anywhere, this is the modern age, if you want to know what a doctor thinks just e-mail him or her, sending the patient is a waste of effort and time and money.

That suggests to me two further possibilities...............

[roguekiwixxy]

It's because they want to see what the hormone level looks like over a 24 hour period. That means every hour they take blood samples to see what the level of hormones are.

Wow you must be a really important person, you must have been really sick....I wouldn't want to be in your shoes, I'm so glad I'm just a run of the mill XXY.

[kamododragon]

I'm asking because you raised the topic without any explanation.

Kallmann's can be treated by any Endocrinologist anywhere, this is the modern age, if you want to know what a doctor thinks just e-mail him or her, sending the patient is a waste of effort and time and money.

That suggests to me two further possibilities...............

Nope, it helps out in further the research and share information as well. I guess you don't think or get out that often, do u.

[kamododragon]

Wow you must be a really important person, you must have been really sick....I wouldn't want to be in your shoes, I'm so glad I'm just a run of the mill XXY.

That's why your still on your old run of the mill KS treatment and I am glad that your endo is not letting you reproduce.

Do you like being sarcastic to people or is that your AD/HD doing the talking.

[roguekiwixxy]

Nope, it helps out in further the research and share information as well.

Ahhh, you should e-mail your doctor my e-mail, I got tons of info on Kallmann's, it's a really simple disorder to treat, it's as easy as Klinefelter's syndrome, nothing complicated at all.

UNLESS.........(drum roll please).......

The Kallmann's or Klinefelter sufferer has another congenital defect, most likely autosomal...then things can get complicated.

That's something I don't have, other congenital disorders found in Kallmann's sufferers, so what have you got?

[kamododragon]

Ahhh, you should e-mail your doctor my e-mail, I got tons of info on Kallmann's, it's a really simple disorder to treat, it's as easy as Klinefelter's syndrome, nothing complicated at all.

UNLESS.........(drum roll please).......

The Kallmann's or Klinefelter sufferer has another congenital defect, most likely autosomal...then things can get complicated.

That's something I don't have, other congenital disorders found in Kallmann's sufferers, so what have you got?

Do u do this every day or do you have a LIFE outside of BLO

[prince....ss?]

Can the both of you discuss this without all the nasty comments. Insulting each other is not helping the understanding.

[roguekiwixxy]

Can the both of you discuss this without all the nasty comments. Insulting each other is not helping the understanding.

Please quote where I have insulted komododragon?

[roguekiwixxy]

Do u do this every day or do you have a LIFE outside of BLO

Yes, I'm a landscape gardener, and if you'd like to check the weather for Palmerston North, New Zealand over the past 2 months you'll see we've had unprecidented rain and totally bad weather.

So even when it stops raining the chances of getting much work done is pretty limited.

See how good I am at answering your questions, so oblige please, why do you think I need to see a psychiatrist?

[prince....ss?]

Wow you must be a really important person, you must have been really sick....I wouldn't want to be in your shoes, I'm so glad I'm just a run of the mill XXY.

You are correct this is the worst and I must admit you could have been sincere and not condescending.

I apologize I must have been thinking of the responses to duckslammer or your favorite person in the world Rick the Prick.

I hope you understand we need to police ourselves and put an end to all the negative themes between each other.

[roguekiwixxy]

You are correct this is the worst and I must admit you could have been sincere and not condescending. I apologize I must have been thinking of the responses to duckslammer or your favorite person in the world Rick the Prick. I hope you understand we need to police ourselves and put an end to all the negative themes between each other.

Frankly, your veiled attempt to be moderate has failed.

If Nicky has Kallmann's it's a mystery to him because he can't explain a thing about it.

I hardly ever think about Rick the Prick, I had my vent and now I'm happy, and when you vented at XXYTALK I didn't see anyone criticise you. Maybe I'm blind, or maybe it just didn't happen?

Now if you were 'policing' yourself you'd not have said anything. There was no need. I can handle anything Nicky's got to offer without any assiatnce at all, the guy is literally out of his league.

[prince....ss?]

We all need to take responsibility to keep this place nice. So every person here should speak up when the personal insults and name calling start to flair up.

Do you want BLO to be a safe comfortable place for conversation, information and support? Or do you want the Jerry Springer version?

This is all I'm saying

[kamododragon]

Please quote where I have insulted komododragon?

Well, when you first came in here, you insulted me by saying I am not intersex and I am a poser. I think you insulted me and pissed me off.

[roguekiwixxy]

We all need to take responsibility to keep this place nice. So every person here should speak up when the personal insults and name calling start to flair up.

I've called no-one names or made any personal insults.


Do you want BLO to be a safe comfortable place for conversation, information and support? Or do you want the Jerry Springer version?


The style this forum has it had before I arrived and I came here to support you because you were getting flamed for nothing.

This is all I'm saying

Thank you.

[kamododragon]

Frankly, your veiled attempt to be moderate has failed.

If Nicky has Kallmann's it's a mystery to him because he can't explain a thing about it.

I hardly ever think about Rick the Prick, I had my vent and now I'm happy, and when you vented at XXYTALK I didn't see anyone criticise you. Maybe I'm blind, or maybe it just didn't happen?

Now if you were 'policing' yourself you'd not have said anything. There was no need. I can handle anything Nicky's got to offer without any assiatnce at all, the guy is literally out of his league.

Boy if you think I'm out of my league, then you hadn't met peaceparty and if you think i'm out of my league, then after talking with peaceparty then your see who's out of who's league.

Frankly, I believe that roguekiwixxy is out of his league and he's nothing more than an immature XXY who thinks he knows better, but in reality doesn't. What ever he dishes out, I can dish out better. So the only policing we need is to kick out those that are here to make trouble and kick out posers such as roguekiwixxy who are here just to make trouble.

[kamododragon]

You are correct this is the worst and I must admit you could have been sincere and not condescending.

I apologize I must have been thinking of the responses to duckslammer or your favorite person in the world Rick the Prick.

I hope you understand we need to police ourselves and put an end to all the negative themes between each other.

Frankly, I think that those who came from XXYTALK are the ones that are causing the most trouble in here.

[roguekiwixxy]

Well, when you first came in here, you insulted me by saying I am not intersex and I am a poser. I think you insulted me and pissed me off.

You piss me off, so what?

According to my medical data definition of what Intersex is Kallmann's does not make the grade, that you know, but according to the new owners of the now former ISNA any persons with a Disorder of Sexual Development does make the grade, that's where you fit in.

I'm happy to accept the decision of those who run BLO that you are a legitimate Intersex person so far as their definition is concerned for this forum.

But outside this forum, my personal opinion stands.

[kamododragon]

You piss me off, so what?

According to my medical data definition of what Intersex is Kallmann's does not make the grade, that you know, but according to the new owners of the now former ISNA any persons with a Disorder of Sexual Development does make the grade, that's where you fit in.

I'm happy to accept the decision of those who run BLO that you are a legitimate Intersex person so far as their definition is concerned for this forum.

But outside this forum, my personal opinion stands.

yes you piss me off and you better apology right now.

Personally, I think your a poser and I personally think your a pain in the @<hidden> I think your someone with issues and you need to stop pissing people off.

See that's your knowledge and that your knowledge is weak and junk science So you don't know jack about intersex until you spend time under the wings of intersex specialist and intersex researchers.

As far as I am concern your just an immature intersex looking to make yourself look big in the intersex community. You want to find your place within this intersex community, but the way you are doing things you are making people more pissed off than friends.

So chill out and stop pissing people off in here.

[roguekiwixxy]

yes you piss me off and you better apology right now.

Or?


Personally, I think your a poser and I personally think your a pain in the @<hidden> I think your someone with issues and you need to stop pissing people off.


Or?


See that's your knowledge and that your knowledge is weak and junk science So you don't know jack about intersex until you spend time under the wings of intersex specialist and intersex researchers.


You do?


As far as I am concern your just an immature intersex looking to make yourself look big in the intersex community.


An opinon, that's a change.


You want to find your place within this intersex community, but the way you are doing things you are making people more pissed off than friends.


Me, I'm not doing anything, you must be mistaken.

So chill out and stop pissing people off in here.

I told you, I don't take bait, have you noticed?

[CC]

Nothing is cured, only hidden.

I'll second that DD:thumbs_up

[roguekiwixxy]

I'll second that DD:thumbs_up

If you're talking about yourself you can, but you're not.

[CC]

or your favorite person in the world Rick the Prick.
I hope you understand we need to police ourselves and put an end to all the negative themes between each other

It all starts with you my dear,it all starts with you :lightning

[CC]

Frankly, I think that those who came from XXYTALK are the ones that are causing the most trouble in here.

Did you not come from XXYTALK yourself :brick:

[CC]

If you're talking about yourself you can, but you're not.How do you know what I'm talking about :push:

[roguekiwixxy]

How do you know what I'm talking about :push:

Ohhhh, possibly replying to a reply of ducklslammer to me might be a clue?:-)

[The Female Eunuch]

Frankly, I believe that roguekiwixxy is out of his league and he's nothing more than an immature XXY who thinks he knows better, but in reality doesn't. What ever he dishes out, I can dish out better.

I believe BLO would be a better place without people competing to show how much shit they can dish out at each other.

[fraulein_Maria]

[QUOTE=The Female Eunuch;17670]I believe BLO would be a better place without people competing to show how much shit they can dish out at each other.

>>> here, here! <<<

[prince....ss?]

I agree, I third that motion.:ARMS1:

[roguekiwixxy]

I agree, I third that motion.:ARMS1:

There's only 1 person who chuks the faeces about, and you keep encourageing him, so can you ignore him?

[prince....ss?]

I am not encouraging him to do anything more than be polite and civil towards others. This is the same encouragement I'm giving to all BLO members. I am not singling any one person out. There are a great number of us here that need some work on being polite and civil...myself included.

You claimed censorship in another post. I do not want to censor you nor do I have the tools or authority to do so. That is Peter's job. Now I don't see why you can't speak your mind, get your opinion expressed and make your point and leave all the fighting points behind.

You are more than smart enough (my complement to you) to make this work.

Think about being in a pub and some big drunk comes over and starts hanging on you.

There are many non confrontational ways to ask him to give you some space. Each way will get your point across it will express your opinion and hopefully accomplish what you are asking.

Or you could tell him to get the fuck off of you and start calling him names. Then he pops you in the mouth and the rest you can imagine.

If you don't get this drunk off of you and your non confrontational ways do work. Talk to the bouncer Peter...He's the big man at the door.

But you are smart...real smart so you know these things. I and hopefully We as members of BLO ask that everyone makes every attempt at being polite and civil towards others.

Just because someone is being a jerk does not make it right to be a jerk back.

Melonade called me a poser. Yes that hurt me and made me upset. I feel it was wrong for her to do so. Not once did I start calling her names or flinging insults nor did I tell her a multitude of things that are rude or insulting.

Melonade had an opinion and expressed it. Yes it hurt but I respect that it is her opinion. So that is the end of that.

I'm not trying to force anyone to do anything I Just want BLO to be a nice place again. I hope you can appreciate that.

[kamododragon]

Did you not come from XXYTALK yourself :brick:

:umno:, I wandered in here and didn't come from XXYTALK.

[kamododragon]

[QUOTE=The Female Eunuch;17670]I believe BLO would be a better place without people competing to show how much shit they can dish out at each other.

>>> here, here! <<<
Same here. I think that too much of the T from XXYTALK is being dumped into here

[prince....ss?]

[QUOTE=fraulein_Maria;17672]
Same here. I think that too much of the T from XXYTALK is being dumped into here


Was this last comment really necessary? not very nice

[OkieDokie]

That's because they are doing both research concurrently. It's obvious that you don't have the brain power to figure that out. It's obvious that your so clueless and so dumb. It's no wonder why you were never able to get in on all the KS and intersex research and your still on your needle treatments. Oh and btw, I'm calling you out as a poser here. I don't think your intersex in here.
Available low-testosterone replacement treatments in the US include two types of gel: androgel and and testim; depot testosterone injections (testosterone cypionate); a patch called androderm; a buccal patch (sticks to the gum inside the mouth) called striant; and implants which are surgically inserted under the skin.

There are oral forms of testosterone such as halotestin however they are used only for delayed puberty, never for long term replacement, due to liver toxicity. Other oral forms are used to increase muscle formation and used by AIDS and cancer patients to prevent muscle wastage, never for replacement therapy.

Though available, implants are never used.

The gel are generally the treatment of choice, as they deliver a day's supply of testo within a day. This means blood levels don't get too high or too low, hence chance of prostate problems is low, and hematocrit is unaffected. However in many patients the androgel is not well absorbed. Testim uses a permeating agent which greatly enhances absorbtion however the permeating agent has a strong odor many find objectionable (it is the same chemical as used in musk oil perfume, makes a person reek like deer bait, as my endo put it).

The androderm patch is very effective for most however it causes allergic reaction in 60% of users, according to a british study, and 20% of those find the reaction so severe they are forced to stop using it.

I have tried all of those (except the implants) and either they didn't work or the side effects were too severe. Injections are the only fallback available to me.

Nicky, I see you are long on quoting web sites that you obviously don't understand, and dishing insults, but painfully short on information. Your language skills are marginal and your education is pitiful at best.

You like to give opinions, but they aren't based on knowledge, only prejudice and hatefulness.

And by the way, the word is spelled POSEUR.

dd

[kamododragon]

Available low-testosterone replacement treatments in the US include two types of gel: androgel and and testim; depot testosterone injections (testosterone cypionate); a patch called androderm; a buccal patch (sticks to the gum inside the mouth) called striant; and implants which are surgically inserted under the skin.

There are oral forms of testosterone such as halotestin however they are used only for delayed puberty, never for long term replacement, due to liver toxicity. Other oral forms are used to increase muscle formation and used by AIDS and cancer patients to prevent muscle wastage, never for replacement therapy.

Though available, implants are never used.

The gel are generally the treatment of choice, as they deliver a day's supply of testo within a day. This means blood levels don't get too high or too low, hence chance of prostate problems is low, and hematocrit is unaffected. However in many patients the androgel is not well absorbed. Testim uses a permeating agent which greatly enhances absorbtion however the permeating agent has a strong odor many find objectionable (it is the same chemical as used in musk oil perfume, makes a person reek like deer bait, as my endo put it).

The androderm patch is very effective for most however it causes allergic reaction in 60% of users, according to a british study, and 20% of those find the reaction so severe they are forced to stop using it.

I have tried all of those (except the implants) and either they didn't work or the side effects were too severe. Injections are the only fallback available to me.

Nicky, I see you are long on quoting web sites that you obviously don't understand, and dishing insults, but painfully short on information. Your language skills are marginal and your education is pitiful at best.

You like to give opinions, but they aren't based on knowledge, only prejudice and hatefulness.

And by the way, the word is spelled POSEUR.

dd

Apperantly, your another one of them posers as well.

[fraulein_Maria]

[QUOTE=duckslammer;17690]

Though available, implants are never used.


>>> never used by whom duck? i didn't bring that up as a hypothetical. there is a doctor O'dea who's treating people with that shite, and the reason why i brought it up was to warn people away from that... QUACK ;) <<<

[JOS]

ok, I've completely forgotten the point to all this... some seem intent on posting long comments that say nothing!

so in for a penny, in for a pound

when people keep saying

another one of them posers

I thought they were using it in the truest sense of the word... someone posing as intersex when they are not... a pretender.

but are people actually meaning

And by the way, the word is spelled POSEUR.

in the sense "show off " and pretentious

or maybe the point is it's to mean both???


absolutely nothing to do with XXY (movie or genetics)... but hey nothing else was either!! :mouth_clo

[kamododragon]

ok, I've completely forgotten the point to all this... some seem intent on posting long comments that say nothing!

so in for a penny, in for a pound

when people keep saying



I thought they were using it in the truest sense of the word... someone posing as intersex when they are not... a pretender.

but are people actually meaning



in the sense "show off " and pretentious

or maybe the point is it's to mean both???


absolutely nothing to do with XXY (movie or genetics)... but hey nothing else was either!! :mouth_clo
That's one of the hallmarks of someone from XXYTALK. They hijack any forum and make it very useless.

[fraulein_Maria]

[QUOTE=JOS;17697]ok, I've completely forgotten the point to all this... some seem intent on posting long comments that say nothing!

>>> lol . if you, with a "normal" brain (LOL!) can't follow all this nonsense, imagine how it is for us ADD'ers? if i didn't have half a dozen people on ignore i'd be totally lost! <<<

I thought they were using it in the truest sense of the word... someone posing as intersex when they are not... a pretender.

>>> i know i was. <<<

but are people actually meaning

in the sense "show off " and pretentious

or maybe the point is it's to mean both???

>>> actually the root verb is "to pose" as a model does, and what is she doing but strutting her stuff? But a model is not real. she is a mannakin for hire, and the smart ones know it. Peel away the make-up and you'd hardly recognize them.
this is not in anyway meant to disparage them. they 'pose for a living, everyone knows they are doing it, and we pay them for the lovely illusion. the same is true for actresses, actors and magicians. we don't mind if they "lie" to us because our social contract says its there job to do so on stage.....

but the 'poser we dislike is a person who is always 'posing, the person who hates there true selves so much, that they must always present a false face to the world.
ordinarily, i could care less about such people and can even pity them. the person who presents as santa claus is a harmless enough fellow. the one who presents as a "look-alike" for someone famous is simply boosting there ego. there are some men who present as women for the thrill of fooling people. and then there's the ones that come here....

i don;t know enough about them to discern there motives with complete accuracy, but there is one characteristic they share....

they are attentions seekers. they do not care if the attention is positive or negative as long as they are not ignored... being ignored is the worst thing imaginable to them.

i find them extremely hard to relate to. i lived in my fathers concentration camp... and would have given anything to simply be left alone. <<<

[OkieDokie]

Though available, implants are never used.


>>> never used by whom duck? i didn't bring that up as a hypothetical. there is a doctor O'dea who's treating people with that shite, and the reason why i brought it up was to warn people away from that... QUACK ;) <<<

Sorry, I must have missed your post. That's just part of my standard spiel when explaining about US methods.

That's really bad. Like, scary bad. But I can't say as I am surprised. I have been misinformed and mis-treated by lots of docs which is part of the reason I join XXY forums and explain things to people.

So long as implants are accepted by the FDA, there is nothing we can do about it except keep up the education campaign. Strangely, none of the XXY websites I have seen in recent memory discussed replacement methods. That would probably be a start. But that only addresses XXY needs, and there are many people who are being treated for low testo from other causes.

[OkieDokie]

I thought they were using it in the truest sense of the word... someone posing as intersex when they are not... a pretender.

Hi JOS! I hope I don't sound sexist in saying this, but in your pic, you look absolutely delicious. Well, OK, it IS sexist! LOL

You're right that this comment has nothing to do with XXY but I don't know where else to stow it?

From Priceton's WordNet: (n) poseur, poser (a person who habitually pretends to be something he is not)
From the Wikitionary: Poseur: One who affects some behaviour, style, attitude or other condition, often to impress or influence others.

What does that have to with BLO? Simply this: here and on xxytalk, Nicky pretends to have XXY and becomes abusive whenever any disputes him. He also claims to be intersex.

Nicky is a poseur. He is posing as something he is not, in order to "impress or influence others".

If Nicky was a nice guy, nobody would take notice of his intersex status. But he isn't. He is mean and nasty and goes around starting flame wars.

Peter needs to boot him. That will end all the flame wars, real quick.

[fraulein_Maria]

[QUOTE=duckslammer;17776]Hi JOS! I hope I don't sound sexist in saying this, but in your pic, you look absolutely delicious. Well, OK, it IS sexist! LOL

>>> see JOS? now i don't want to hear anymore nonsense about your so-called manliness, or i will be sorely tempted to use my nefarious web skills to find your husband, and tell him you are in desparate need of a spanking. ;)

Just in case you weren't paranoid enough, LOL. <<<

What does that have to with BLO? Simply this: here and on xxytalk, Nicky pretends to have XXY and becomes abusive whenever any disputes him. He also claims to be intersex.

>>> sadly, we have LOTS of those @<hidden> they seem to be especially skillful at sucking up when it suits them....

but thankfully, though i am at least as hormone driven (perhaps more so) as the average male (thankfully down from a MUCH higher level thanks to prednisone) such tactics are viscerally repugnant to me.... if i wasn't convinced they were nothing more than whores before, i am totally convinced now. <<<

[peaceandparty]

in this thread i found a lot of facts and a lot of crap!

fact number one

nearly everyone is nasty

fact numbber 2
we all go off topic naturally

fact 3
many people were ignored in that thread

fact 4
calling anyone a poser in any meaning is none of our businesses we are not in complete control of how others will go about their lives

fact 5
xxytalk has influenced many of its members to have a stance of zero tolerance...which leads to domineering and sometimes very shitty remarks

fact 6
if anyone wants a decent life....do not come on to forums to discuss
just state your opinions........call them your facts
and nearly dont even bother reading replies
replies could be filled with hate,ignorance,rudeness and all sorts ow unwanted nagativity

come to forums to question,be polite,make friends,get contacts and get contacted by people who care about you!
to learn ,to teach,to regret,to forgive,to accept ,to let go and to enjoy YOURself

last fact
banning is BLO´s business
but its my theme........i think banning is 20th century
i believe no one in the last while should and needed to be banned
and if so...then i would clump 4 other xxys in there with the poser kallman man!
people should not have to feel as if they need to explain themselves and their conditipns or at the very least their feelings to anyone....and there should be no need to prove anything with medical fact
an example of proof of identification:mmy passport tells people i am male
male is supposed to be scientifically xy chromosmes
though as some know there are also xy females
i am xxy
my pasport does not show my identity!
my passport is a legal identification document
yet my condition cannot be proved!

please people dont ask people to prove themselves before you pull them out of the poser factory!

[JOS]

... I really do... but I think you might be missing one small point.

originally people weren't ACTUALLY fussed by WHAT condition someone had (or hadn't got).

all WERE welcome... even people with no "condition", parents, friend of a friend, just curious, etc..... EVERYONE welcome. The only stipulation was that it had to be relevant to intersex with a theme of support or information!

where people BECAME less welcome (by some) was when they were perceived to:
have said one thing one day and a different thing another
or when they refused to have a rational debate
or when they got very personal with an individual(s)
or when they came in with a specific agenda
and if it wasn't deemed relevant to IS and/or wasn't supportive and informative
when someone thought the info being given was wrong/unhealthy

So that's the crux of the problem as I see it.
Not "what is you condition?... not intersex enough, you're out!"

if someone is asked to explain themselves and they say "why should I"... how can the discussion continue??

If you tell someone their views don't fit with yours?
what choices do you have?... discuss it or ignore them on that issue

if you discuss it... but they won't or can't?
what choices do you have? try again or ignore them on that issue

once you have tried many times, and others have too... and that individual IGNORES the chances being offered them?
The only, final, option available to you (if you don't want a continual flame war) is to ignore them on that issue?

If they refuse to discuss another issue?
That leaves you with ONLY the IGNORE option??

I haven't been here sooo long, so I'm still fairly naive and "patient"... ie I haven't learnt when to "ignore" at the same "earlier" point in time that others who have been having to deal with this for ages do

But be honest... if you had to keep saying the same thing over and over again... wouldn't you get a bit tetchy... like an old married couple are LOL?

(my capitalisation is for emphasis assistance only and does not indicate shouting/anger/crossness!) :D

This post is only meant as a "hypothetical" discussion point and is NOT directed at any one individual. :angel_smi

loves ya'll
Jos

[peaceandparty]

great post and i read you loud and clear

thanks a lot for writing that

it was easily readable

and oh yeah......i also use block capitals and people think i am shouting!
ah well its down to culture and different personalities and different methods of communicating
like:i even confuse myself when i write somethings sometimes
find it better to do videos

[OkieDokie]

i
fact 5
xxytalk has influenced many of its members to have a stance of zero tolerance...which leads to domineering and sometimes very shitty remarks


You have a gripe with the former owner of xxytalk, please don't attack ALL xxytalk members ok? Nobody controls how I think and what I say but me, ok? What you just wrote is a very shitty remark. Take your problems with xxytalk to some other forum.

[prince....ss?]

I almost agree with that.

But your thoughts on ignoring I disagree with.

I do not like the ignore feature that this place has to offer.

To ignore someone is very very rude. If someone was in the same room with me and tried the ignore feature. I guarantee that would not last long.

People that ignore others have this superiority complex. (I'm better than you I don't need to acknowledge you) well this mentality is wrong and extremely hurtful. Why would any self respecting human want to hurt another by ignoring them.

Ignoring someone is equally bad if not worse then physical abuse. Mental abuse can be extremity damaging. Everyone that grew up intersexed I bet had their fair share of mental abuse.

Think back in your past if you have ever been struck by anyone. At this moment which do you feel more pain, past physical experience, or a mental experience. (some little shit making fun of you for something) For me it's the insults and people that felt the need to boost their own ego by ignoring me. That is long lasting.

Ignoring someone should have been one of the 10 commandments. "Thou shalt not ignore"

Any way that is the way I feel about that. People that ignore are really small minded evil people at heart. People that ignore abuse animals. People that ignore have no self respect.

[OkieDokie]

People whose posts irritate me excessively will become ignored, whether by me just not reading any of their posts, or by changing a setting. It's about MY mental health and well being,, which I happen to value more highly than some attention-seeker's desire to be noticed.

[prince....ss?]

Was it not you that made mention of not getting emotionally involved with on line posting or something to that nature? If you did not get emotionally involved why and how could someone get you irritated to a point that you would need to ignore them?

Just to be flipant, If someone ignored me and we were in the same room, they do need to be concerned about their mental health especially their well being.

Wink, wink, nod, nod....I don't tolerate being ignored in person.

[JOS]

I find your posts on the topic of ignoring
intimidating and upsetting
I can see that there are instances where being ignored would be frustrating and hurtful but there is NO excuse for violence.

it's like those people who say "if he cheated on me, I'd cut his dangly bits off"

your response to that FAR out-weighs what is warranted

sure, make a mental note that you don't like that person but threaten them??? I my opinion that is a complete infringement of their rights!

there is no law that everyone must talk to .... "insert name here".... that is just nonsense (IMO).

what happened to those old sayings:

"turn the other cheek"

and

"if you can't think of anything nice to say, say nothing"

and

"lets just agree to disagree"

one diminishes ones self by being so personally afflicted by the choices that other people make....

you can ONLY control YOURSELF??

and it is unfair and unacceptable to think one should be allowed to control someone else.... IMO!

[prince....ss?]

Well what can I say...yup

I never claimed to be an angel. I also carry a gun and have a loaded weapon in every room of my house. So would that statement intimate you as well? I believe in self protection as well as rules society lives by. If you insult someone to their face expect to get punched...no difference. If you are rude to someone expect something in return.

There is a big difference between having nothing nice to say and ignoring them.

Your statement about only being able to control your self it true to a point. In real life people are controlled by others constantly. so to think we are all free beings doing as we wish is a bit polyanic...more sugar and spice please.

People do not have the right to be rude.
People do not have the right to intentionally hurt another.

My version of turning the the other cheek. turn cheek, close one eye, and aim.

I'm sorry you feel there is no need for violence and I do agree with that but I'm also a firm believer in self defense. So if someone hurts me...I hurt back

If someone is ignoring me (rude)...I get rude back. easy as that.

we all handle things differently and I respect that this is not your way. You may find it intimidating and upsetting...but this is the world we live in and there are far worse people out there then me... sorry

[Andre]

People do not have the right to be rude.
People do not have the right to intentionally hurt another.

No one has any qualifications to judge another, you only have enough to judge yourself.


Andre

[CC]

You have a gripe with the former owner of xxytalk, please don't attack ALL xxytalk members ok? Nobody controls how I think and what I say but me, ok? What you just wrote is a very shitty remark. Take your problems with xxytalk to some other forum.

I missed P&P's original 'shitty' remark so, thanks for bringing it to my attention....just to let you know, I agree with your comment on that.

[OkieDokie]

I missed P&P's original 'shitty' remark so, thanks for bringing it to my attention....just to let you know, I agree with your comment on that.
Well, you know, his problem is not with xxytalk or any of its members - his problem is with the former manager.

This is like deciding to hate all americans because Bush is an idiot. Or Nicky hating all trans because his parents did him wrong.

I wasn't on xxytalk when all that went down, I had believed maybe Gavan got the short end. I actually went to the new manager and argued to have him allowed back on. And here he is, blaming ME for what happened!! What a bunch of ignorant crap.

Gavan, you owe all xxytalk members a very personal apology.

[prince....ss?]

No one has any qualifications to judge another, you only have enough to judge yourself.


Andre

I agree that no one has QUALIFICATIONS to judge another, But you can not go through a day with out making judgments about another. Judgments are the same a opinions and we all know we all have opinions. You may meet someone in the grocery store and chat for a second and by the time you part both parties will make numerous judgments about one another. Are they nice, smart, cute, dangerous, mentally stable just to name a few.

On the other side most people are unable to judge themselves. They go through life in this reactive state. Do you think others see you as you see your self? I would think not.

So in this reactive state if someone is rude to you, you will react to that in some way. With as many people out there and the huge number of personality types tied in with people having good days or bad days or any number of things that influence peoples behavior.... If you are rude to someone(this includes ignoring) you are rolling the dice as to what the reaction will be to this rudeness.

I try to be polite even if I'm annoyed with someone because I prefer not to get popped in the mouth. But if someone is being rude to me...they will get what they ask for and then some.

If you play with fire...you will get burnt!

[Andre]

On the other side most people are unable to judge themselves. They go through life in this reactive state. Do you think others see you as you see your self? I would think not.

Good point, however judging another IS judging yourself.

It comes down to this, at one in time your experiences with humans in any facet gives you a comparison (what you liked, didn't like) and then you have a choice : live and let live or tell that person what you don't or do like.

Everyone has a certain value in which everyone else is measured by, how you get that value is either by relying on other people's values, knowing your own by experience (in which you need to check yourself often) or adopting a value to which there is no consequence (ie promoting yourself).

Everyone can needle another, it's easy. Not everyone can see the value of another because it's hard to do that, it means you would have to get to know that other person enough to see that there is something in which you can relate to, a commonality.

There is a lot to be said for standing back and observing before taking the plunge in showing others thier own faults. Constructive criticism is a lost art, destructive is easy.

The old adage that once you point a finger that there is three pointing back does come to play when pointing out people's faults, in which case you are pointing out your own as well.

There isn't enough empathy going around because you need to see yourself in that person's life, past and present.

My advice would be to take people they way they are. If you don't like them then it's a simple matter of moving on to another that you do like then come around again and see the incumbent in another light. It takes work and that is a four letter word that most everyone would like to avoid.

Andre

[prince....ss?]

I do see your point and I think we are talking the same but from different viewpoints and in the end we are on the same page.

A question for everyone.

You have a very good friend that you care about. You have been friends for a long time.

One day out of the blue they ignore you. They won't explain a thing and you don't know what brought this on.

First question is how would this make you feel?

Second question is how would you respond, what would you do about it?

[Dianne]

First question is how would this make you feel?

Probably a bit sad that something has happened to change our friendship.

Second question is how would you respond, what would you do about it?

After giving them the opportunity (or two or three) to talk about it, I would 'let it go' and carry on treating them as a friend until/unless it became apparent that they didn't want that anymore. If that time came, I would just drift away out of their life.

[peaceandparty]

I missed P&P's original 'shitty' remark so, thanks for bringing it to my attention....just to let you know, I agree with your comment on that.


well actually i f you are both going to suggest i dont talk about it and then ikie dokie actually starts telling you and and all that my gripe is with its former manager!and actually talking about it himself
so i beg you to realise that what you are talking about is controlling me with rules that dont even exist!

i would say that my gripe is not even with the former manager

my gripe is over the out dated system of banning and ignoring

i think princess made a very good point on the ignoring point
i hope both of you cc and okiedokie have read that in its entirety!

by the way...i make points...some are hard to digest"shitty"
it will be hard to find "shitty"posts from me all my enemies!
but not impossible

[peaceandparty]

i would add that dianne and prince....ess are talking about some good base ppoints above

and i would like to say before i go off to my gig and entertain people
that i would really like to see an end to personal hostility
if we dont get on...then dont get on the band wagon trying to make people feel uncomfortable to speak out!

[OkieDokie]

Gavan, according to the banner at top, BLO is for "intersex information and peer support". I don't see where griping about another forum fits into that. If you want to discuss this somewhere else besides BLO, where such discussions are welcome and appropriate, I'll be happy to entertain your comments there.

[OkieDokie]

I'm here to learn about issues surrounding intersex. If someone feels as if I am ignoring her, it's most likely because you're talking about something that has no bearing on my purpose to be here.

My apologies to Maria for stepping on her toes. She is the teacher, you are all teachers, let me be your student. Learning about intersex issues will help me give better support in the XXY community.

[fraulein_Maria]

[QUOTE=OkieDokie;18450]

My apologies to Maria for stepping on her toes.

>>> its ok duck, i know you meant well. I'm learning alot too, and very happy to do so. :) My very dry text and professional journals can tell me NOTHING about what you THINK and FEEL. I know what it is to be raised female and have doubts thrust upon myself..... though Emily and i have very different conditions and very different parenting, we never-the-less reacted very similarly.

I do not know what it is to be male.

I experienced a wash of hormones both before and after birth that the "brain sex" idiots say should have been more than sufficient to make me a FtM trans... yet i am not. i have raised one. i impersonated one for fun and profit. i even went so far as to briefly attempt to live as one. Even with all that T. even loving women, even being treated as male, it still never touched my soul.

So there is that for me to learn. It may never touch my soul, but i hope that i will at least have head knowlege and heart understanding.
Boys were my friends growing up. :) we liked the same things. We still like the same things ;) it was a sad day for me when they began noticing me as female... suddenly, the tom-boy they tackled and could get tackled by became as fragile as glass in there eyes... no more boy play mates. :(

the girls were still interested in little girl (not tom boy) things and the older girls i was beginning to resemble, were all boy CRAZY.

so it was a very lonely time for me. fortunately, that faded over-time. we all grew older even if some of us never grew up, and i watched as the few girlfriends i had succumb to drugs... the boys to booze and jail. The survivor guilt i have is incredible. half my classmates are dead. How did i escape there fate? i wasn't a better person. I made at least as many mistakes as they. That movie "angels with dirty faces" resonates so much for me. The only difference between the preist and the gangster? one at the age of 8 out-ran the cops, and the other did not.

[OkieDokie]

I'm not sure I know what it is "to be a man" either, though I have learned to play the role, and since I started getting hair on my upper lip at the age of 35 (I'm 53 now) I began to finally look like one.

There is a lot I could write about feeling left out and unable to conform to gender roles in younger years, but...I guess I don't feel like this is the right forum for an XXY story. Though we all technically fit under the same intersex umbrella and share some of the same issues and problems, somehow I feel as if I don't quite fit in here.

[Kailana]

you fit in fine OkieDokie, none of us are exactly the same, and I really wish some of the others really understood just how different each of us has been treated and just how varied each of our experiences have been.

None of us are the same, but many of us do have similarities that help make us or allow us to understand one another. That is one good thing about having a place to chat with one another. As soon as alll the flaming stops the forum will get back to its normal "how can we help each other best" attitude and awareness, support that is really what this forum is best at.

hang in there, i am quite sure you have a bit of knowledge one of us or more would/could find usefull knowing.

[fraulein_Maria]

[QUOTE=OkieDokie;18468]I'm not sure I know what it is "to be a man" either, though I have learned to play the role, and since I started getting hair on my upper lip at the age of 35 (I'm 53 now) I began to finally look like one.

There is a lot I could write about feeling left out and unable to conform to gender roles in younger years, but...I guess I don't feel like this is the right forum for an XXY story. Though we all technically fit under the same intersex umbrella and share some of the same issues and problems, somehow I feel as if I don't quite fit in here.

>>> i'm sorry to hear you say that. i didn't go to XXYtalk because it did not feel right to invade a men's lockeroom just to satisfy my curiosity. i was actually very glad to see you and the others come. :) I hope you'll stay.

i'll stay out of the XXY forum if it makes you uncomfortable for me to be there sticking in my two cents... <<<

[OkieDokie]

i'm sorry to hear you say that. i didn't go to XXYtalk because it did not feel right to invade a men's lockeroom just to satisfy my curiosity. i was actually very glad to see you and the others come. :) I hope you'll stay.

i'll stay out of the XXY forum if it makes you uncomfortable for me to be there sticking in my two cents... <<<

Gosh, no! Please join xxytalk , read everything and ask all the questions you want! You will get more perspectives than just mine. What I would post here is just my own personal history and feelings. Remember that XXY is highly variable in expression. We are all over the map in all the various characteristics.

You are an intersex community activist and a health care professional. I would even say you have a responsibility to know about XXY.

If you want to get the in-depth view, there is a study group forming to review the landmark studies over the years. This is being organised by Vaughn Hambley (47xxy.com).

My role on xxytalk is very different than here. On xxytalk, I am one of a very few who is able to explain the medical stuff, and often do. I'm also well versed in adult treatment issues. What I don't much of anything about is childhood issues; that's something I really need to learn more about.

I guess my discomfort was based on not being physically intersexed, although I suppose that's debatable. I have male genitalia with pea sized testes that don't do me a damn bit of good. I had gynecomastia, surgically removed when I was 18. And I've never really felt male, never felt comfortable around masculine folk - male or female. I'll write more when I have time.

[CC]

i'm sorry to hear you say that. i didn't go to XXYtalk because it did not feel right to invade a men's lockeroomSadly,it does feel like that at times but,you ought to come anyhow as, apart from the men ?? we also have many others of indiscriminate gender :grouphug0

[OkieDokie]

Sadly,it does feel like that at times but,you ought to come anyhow as, apart from the men ?? we also have many others of indiscriminate gender :grouphug0
Good point! It is not a "men's locker room" but rather an "intersex locker room". (But I think the word you wanted was "indeterminate" :) :) :) )

I realize now that my discomfort about posting here was a function of me having similar attitudes about BLO. Even as self-proclaimed intersexuals, we're still getting bogged down in sexual stigma issues, as if there were a prurient component to curiousity about variations in genitalia (and the people to whom those parts are attached). Before we can change societal views, we're gonna have to first change our attitudes about ourselves and each other. They're just folds of flesh with various structures and some produce hormones. In the UK, they talk about embarrassment of things "between the navel and the knees". Time to get past that.

And in the case of XXY, there is far far more to it than merely variations in genitalia. In fact, I would say that's probably the least of it, despite some XXY folks' shame at having genitals not looking good in the men's locker room. See? Big time stigma - at the hands of doctors, parents, and peers - when stigma is inappropriate and counterproductive. What is more important is how we feel about ourselves (often discounted, especially when forced into gender roles many of us never wanted to adopt), learning disabilities, comprehension and information processing disabilities, infertility, health issues such increased risk of auto-immune disorders (lupus, diabetes, allergies) and osteoporosis. The list goes on. Much of this can be addressed through early diagnosis, yet most XXYs are never diagnosed (because of shame about things "between the navel and the knees").

So XXY is far more than just an intersex issue. And I feel it is very important for all health care professionals to be educated on what to look for so as to increase the chances of undiagnosed XXY folk being noticed.

Sorry for the soapbox. :)

[peaceandparty]

Good point! It is not a "men's locker room" but rather an "intersex locker room". (But I think the word you wanted was "indeterminate" :) :) :) )

I realize now that my discomfort about posting here was a function of me having similar attitudes about BLO. Even as self-proclaimed intersexuals, we're still getting bogged down in sexual stigma issues, as if there were a prurient component to curiousity about variations in genitalia (and the people to whom those parts are attached). Before we can change societal views, we're gonna have to first change our attitudes about ourselves and each other. They're just folds of flesh with various structures and some produce hormones. In the UK, they talk about embarrassment of things "between the navel and the knees". Time to get past that.

And in the case of XXY, there is far far more to it than merely variations in genitalia. In fact, I would say that's probably the least of it, despite some XXY folks' shame at having genitals not looking good in the men's locker room. See? Big time stigma - at the hands of doctors, parents, and peers - when stigma is inappropriate and counterproductive. What is more important is how we feel about ourselves (often discounted, especially when forced into gender roles many of us never wanted to adopt), learning disabilities, comprehension and information processing disabilities, infertility, health issues such increased risk of auto-immune disorders (lupus, diabetes, allergies) and osteoporosis. The list goes on. Much of this can be addressed through early diagnosis, yet most XXYs are never diagnosed (because of shame about things "between the navel and the knees").

So XXY is far more than just an intersex issue. And I feel it is very important for all health care professionals to be educated on what to look for so as to increase the chances of undiagnosed XXY folk being noticed.

Sorry for the soapbox. :)

this was.........................





an excellent post

wow
brilliant

shame i miss your posts on xxytalk
seriously
wow

[The Female Eunuch]

Fraulein Maria wrote:I experienced a wash of hormones both before and after birth that the "brain sex" idiots say should have been more than sufficient to make me a FtM trans...

transsexual brain theory holds that gender identity is influenced by hormones in the 7th and eighth weeks of gestation. Are the adrenal glands even producing hormones by then? do they even exist yet?

the girls were still interested in little girl (not tom boy) things and the older girls i was beginning to resemble, were all boy CRAZY.

That reminds me of when I was at intermediate school (age 11 and 12). most of the girls in my class seemed to be interested in pop songs and boys, and most of the boys seemed to be interested in military stuff. I wasn't interested in either.

[Dianne]

I wasn't interested in either.

LOL! You are LUCKY! It is a whole heck of a lot more ..... um ... awkward ... when you are interested in boys but have to pretend NOT to be because you are supposed to BE one and you know you are not Gay!

[fraulein_Maria]

[QUOTE=The Female Eunuch;18512]Fraulein Maria wrote:

transsexual brain theory holds that gender identity is influenced by hormones in the 7th and eighth weeks of gestation.

>>> there are other theorists who say as late as 3 months post-natally when there is a hormone "wash" by the testes of XY people... the reason they give for wanting to castrate PAIS'ers in infancy, if they plan on raising them female. <<<

Are the adrenal glands even producing hormones by then?

>>> yes. <<<

do they even exist yet?

>>> yes.

the human fetus is fully formed though not completely differenciated at 6-8 weeks of gestation. what differentiates LAST is "sex organs". <<<

[peaceandparty]

I'm not sure I know what it is "to be a man" either, though I have learned to play the role, and since I started getting hair on my upper lip at the age of 35 (I'm 53 now) I began to finally look like one.

There is a lot I could write about feeling left out and unable to conform to gender roles in younger years, but...I guess I don't feel like this is the right forum for an XXY story. Though we all technically fit under the same intersex umbrella and share some of the same issues and problems, somehow I feel as if I don't quite fit in here.

these sorts of stories are extremely needed in this xxy movie section of BLO

thank you for speaking for me!
though i first grew bits of hair on my face at 26!
people regard my "beard" as being a "3 day beard"...meaning i dont have a full beard!
okiedokie...how long have you been taking testosterone!?
at what age!?

thanks in advance!:ARMS1:

[peaceandparty]

you fit in fine OkieDokie, none of us are exactly the same, and I really wish some of the others really understood just how different each of us has been treated and just how varied each of our experiences have been.

None of us are the same, but many of us do have similarities that help make us or allow us to understand one another. That is one good thing about having a place to chat with one another. As soon as alll the flaming stops the forum will get back to its normal "how can we help each other best" attitude and awareness, support that is really what this forum is best at.

hang in there, i am quite sure you have a bit of knowledge one of us or more would/could find usefull knowing.

wow kailana yoiu are a perfect person for forum groups...so encouraging and all
cool!

[peaceandparty]

Gosh, no! Please join xxytalk , read everything and ask all the questions you want! You will get more perspectives than just mine. What I would post here is just my own personal history and feelings. Remember that XXY is highly variable in expression. We are all over the map in all the various characteristics.

You are an intersex community activist and a health care professional. I would even say you have a responsibility to know about XXY.

If you want to get the in-depth view, there is a study group forming to review the landmark studies over the years. This is being organised by Vaughn Hambley (47xxy.com).

My role on xxytalk is very different than here. On xxytalk, I am one of a very few who is able to explain the medical stuff, and often do. I'm also well versed in adult treatment issues. What I don't much of anything about is childhood issues; that's something I really need to learn more about.

I guess my discomfort was based on not being physically intersexed, although I suppose that's debatable. I have male genitalia with pea sized testes that don't do me a damn bit of good. I had gynecomastia, surgically removed when I was 18. And I've never really felt male, never felt comfortable around masculine folk - male or female. I'll write more when I have time.

i feel absolutely the same okie dokie!
well basically the same!

so thx for posting this because since been banned off xxytalk.com i havent had any real interactions or reading stories with other xxys in a forum group

thx a lot

[peaceandparty]

Good point! It is not a "men's locker room" but rather an "intersex locker room". (But I think the word you wanted was "indeterminate" :) :) :) )

I realize now that my discomfort about posting here was a function of me having similar attitudes about BLO. Even as self-proclaimed intersexuals, we're still getting bogged down in sexual stigma issues, as if there were a prurient component to curiousity about variations in genitalia (and the people to whom those parts are attached). Before we can change societal views, we're gonna have to first change our attitudes about ourselves and each other. They're just folds of flesh with various structures and some produce hormones. In the UK, they talk about embarrassment of things "between the navel and the knees". Time to get past that.

And in the case of XXY, there is far far more to it than merely variations in genitalia. In fact, I would say that's probably the least of it, despite some XXY folks' shame at having genitals not looking good in the men's locker room. See? Big time stigma - at the hands of doctors, parents, and peers - when stigma is inappropriate and counterproductive. What is more important is how we feel about ourselves (often discounted, especially when forced into gender roles many of us never wanted to adopt), learning disabilities, comprehension and information processing disabilities, infertility, health issues such increased risk of auto-immune disorders (lupus, diabetes, allergies) and osteoporosis. The list goes on. Much of this can be addressed through early diagnosis, yet most XXYs are never diagnosed (because of shame about things "between the navel and the knees").

So XXY is far more than just an intersex issue. And I feel it is very important for all health care professionals to be educated on what to look for so as to increase the chances of undiagnosed XXY folk being noticed.

Sorry for the soapbox. :)

if this is a soap box...then count me in as tuned in!:teeth_smi