Perhaps of interest to IS

[Wyn]

I came across this item by chance... perhaps others have seen it?... I know I had not until just a bit ago.
http://www.nocirc.org/intersexed/

[Kailana]

I hadn't read that yet. much appreciated.

[Peggy]

Thanks, Wyn, for posting this link:

http://www.nocirc.org/intersexed/

I noted that the page began with this statement:

One out of 2000 infants is born with intersex genitalia.

Unfortunately, this is incorrect.

Looking at the source article for this claim at the ISNA site (Blackless et. al.), 1/2,000 is not the number cited by the authors themselves, but one they quote in the statement, "Lifford and Dear (1987) suggest that 0.05% 1 in 2,000) newborns have some ambiguity of the external genitalia, although they cite no medical or scientific literature to back up their claim." That number in not mentioned anywhere else in Blackless et. al.. So, this widely quoted number is evidently authoritative only because of having been widely quoted, but it appears to actually have come from nowhere.

See: bms.brown.edu/faculty/f/afs/Articles/Blackless2000.pdf

A meaningful number for the number of babies born with ambiguous genitalia would be the number that have CAH, mid-grade PAIS or other conditions resulting in ambiguous genitalia. That would be more like 1/10,000.

Friendly greetings to all,

Peggy


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"When art critics get together they talk about Form and Structure and Meaning. When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[The Female Eunuch]

Peggy wrote:A meaningful number for the number of babies born with ambiguous genitalia would be the number that have CAH, mid-grade PAIS or other conditions resulting in ambiguous genitalia. That would be more like 1/10,000.

so those of us who have ambiguous genitalia with no known cause don't count?

[Peggy]

Hi all,

Female Eunuch wrote,

so those of us who have ambiguous genitalia with no known cause don't count?

I wouldn't say you don't count as human beings, or that your concerns don't mater, but in making a very rough estimate of the number of children born with ambiguous genitalia, those with no discernible cause are so much less numerous than those with a clear cause that adding their number in would not change the total sum by much.

It is precisely because the conditions I mentioned are relatively common that doctors have been able to put together enough observations to figure out the cause.

Friendly greetings to all,

Peggy


• • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning. When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[Kailana]

Peggy how did you come up with the 1/10000? I know I've read a few doctors recently quote XX girls with CAH as being 1/7000? But I also know I have read other studies where CAH affects 1/350 newborn girls? so am curious about what it is or where your numbers are coming from?

Also wanted to remind people that again, those who get counted are only those that fit a diagnosable condition. like the 17 or so conditions recognized as an intersexed condition. problem is that again, from the last resecent relevent stats i know of only 20% of known cases of ambigious genitalia in males is in diagnosable, the others have know known cause and are not included in studies because they arent considered to actually be intersexed, because they don't fit one of the 17 recognized intersexed conditions. <----goblygook in my opinion and only goes to show that researchers have chosen to not include people, because if they did, then the world would realy know just how common we are.

oh and peggy thank you for the information you emailed earlier, though really wish you would quite siting studies that were done in the 60's. that information really is outdated and extremely limited and most of what is mentioned while relavent has allready been proven to be a false/misleading claim. you really neeed to read more current genetic research to understand that what has been repeated over and over again, is close to nonsense, junk information that doesnt explain much other then there is a genetic error that causes some people to be born intersexed. Seriously have you any idea of your own, PAIS? the actual genetic error that makes for your own form of IS?

I am only curious because I do happen to like you a great deal but if you keep reciting and promoting incomplete information then others will only due the same over and over again. Which is exactly what happens when people are not educated enough to understand what is actually going on with or when incomplete information is used to explain what a condition is, or how it affects a person.

[Aseras]

I think "intersex" issues are a LOT more common then anyone thinks, and it is just very very undiagnosed. Only the people with more "severe" problems get diagnosed right away. Others may make it to thier teens or even later, when they are trying to have children before they get a diagnosis. I am willing to bet the number is MUCH larger, not smaller.

[Dianne]

I am sure you are right Aseras and I suspect the number of cases noted is increasing as awareness increases.

I don't think there was much awareness of the broad range of symptoms that could indicate Intersex conditions 40 or 50 years ago and most infants (at least those born away from major centres, which was the majority in the 1950's and 60's) were just "patched up" and sent on their way often without a word said. Certainly I had issue at puberty (circa 1960) that SHOULD have been investigated and never were; whether out of secrecy or just the lack of knowledge of "old country doctors" I will never know.

[Peggy]

Hi all,

Kailana wrote,

Peggy how did you come up with the 1/10,000?

That is from the Blackless et. al. article, the supposed source of the 1/2,000 number. See:

bms.brown.edu/faculty/f/afs/Articles/Blackless2000.pdf

If Blackless et. al. is an unreliable source, then people should stop quoting the 1/2,000 statistic because that is where it comes from.

I know I've read a few doctors recently quote XX girls with CAH as being 1/7000?

That's still closer to 1/10,000 than to 1/2,000, and remember that most children with ambiguous genitalia have CAH, all other such conditions combined are less frequent. The population frequency of CAH is hard to get a precise number for because it varies quite a bit with ethnicity.

...thank you for the information you emailed earlier, though really wish you would quite siting studies that were done in the 60's. that information really is outdated...

I only sent you that article because you requested it. You had said that the picture on page 896 of Williams Textbook of Endoicrinology (8th edition) was of you and it says on the bottom of that page that the data about that patient was from a source article published in 1968. That is what I sent you. See:

Williams' textbook of endocrinology
8th ed. / edited by Jean D. Wilson, Daniel W. Foster
Philadelphia : W.B. Saunders Co., c1992

Morishima, Akira; Grumbach, Melvin M. The Interrelationship of Sex Chromosome Constitution and Phenotype in the Syndrome of Gonadal Dysgenesis and its Variants. Annals of the New York Academy of Sciences, vol. 155, issue 3 Leukocyte Che, pp. 695-715 Publication Date: 12/1968

Seriously have you any idea of your own, PAIS? the actual genetic error that makes for your own form of IS?

No, I have not had my androgen receptor gene sequenced. I do have a confirmed diagnosis of PAIS due to my feminizing puberty and lack of virilization in spite of having high testosterone levels during my teenage years. So, my diagnosis has not been in doubt for as long as I have been an adult. Thanks for your kindly concern. See this article:

Crawford JD et.al. (1970) Syndromes of Testicular Feminization. Clinical Pediatrics Vol 9, No 3; pp165-178.

I would be glad to send a pdf copy of any of the sources I have just mentioned to anyone who contacts me backchannel requesting it.

...if you keep reciting and promoting incomplete information then others will only due the same over and over again. Which is exactly what happens when people are not educated enough to understand what is actually going on...

Now my feelings are hurt. :broken_he As I mentioned, I looked up that article from the 1960s at your request. I do know what you mean about people reciting and promoting incomplete information because that is what they have been doing with the "one in 2,000" number that everyone has been passing around.

Friendly greetings to all,

Peggy


• • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning. When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[Kailana]

I am interested in the date of publication of the pictures and relavent references dates published. I really did appreciate what you sent, it is always valued, but none of it validates the questionable date you pointed out of when those pictures were first published, none of the patient data was even remotely the same from both groups cited; unless I read that wrong.

also didn't mean to offend any. Just that what I keep telling people is that lots of the information that people quote is outdated, newer studies have been done and while i really do value what doctors thought in the 60's those reports are seriously incomplete. Our good old scientists understand far more now then they did 40 years ago and its those newer studies/research that are really relavent. They are the sources I have read that does clear up the difference, the actual locations of many genetic errors that make for or I should say they claim are the likely known causes for the miriad conditions that cause intersex development.

My only angst is that way too many support groups have information that in all reality is or was just a hypothesis, some of which have been proven to be inaccurate/false like Noonans being a male form of Turners. Noonans is its own condition with its own chromosomal error that affects both boys and girls equally, it only mimics some phenotypical features that has made doctors/researchers assume they are similar conditions. They are not, they are two distinctly different conditions with their own known causes.

Basically most medical outdated literature still repeats that Noonans is a Male form of Turners and it has been proven that it is not. Sorry one of my many angst's when dealing with doctors who have assumed I had Noonan's. Too this date i have never had any diagnosis of having Noonan's ever. What I have had is CAH, even XX CAH, <----that was only thought at the time, and am supposedly XY/XO w/CAH and that only recognized by the military. I am currently having a few issues as the last two hospital visits locally I have had some unusual experiences with staff who jaws drop when reading whatever it is they have on their computers. I know i have deffinately been treated better, but so far have no answers as to why, and am only guessing that some of my medical records are now mentioned. I have been treated with a great deal more respect, and honestly am only slightly disturbed with the VA pharmacist who started hyperventilating after talking to me, when I last refilled a presciption. a very odd experience. Not sure what to make of it. But he was at least very helpfull and respectfull. Think I'll probably find out at my next appointment.

[Peggy]

Hi all,

Kailana wrote,

...I really did appreciate what you sent, it is always valued...

You are very welcome! I'm glad I could dig it up for you.

...but none of it validates the questionable date you pointed out of when those pictures were first published, none of the patient data was even remotely the same from both groups cited; unless I read that wrong...

Are you looking at the right files? The data in table 14-12 on page 896 of Williams Endocrinology 8th Edition are identical with those in table 1 on page 703 of Morishima & Grumbach 1968, except that in the former the patients are identified by numbers and in the latter by initials. It's basically the same table with data from the same nine patients. Would you like me to send the PDFs to you again?

Friendly greetings to all,

Peggy


• • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning.
When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[Kailana]

you are correct it is only slightly different with the initials with a change to numbers. sorry about assuming they were different. well guess they are a lil different but must of just been me not seeing or catching the rest of the information as the same.

hate to ask but did the source textbook? also include those same photos as well?