CAH educational info

[Sunshine1]

Cares Foundation

www.caresfoundation.org


Washington State Dept of Health

www.doh.wa.gov/EHSPHL/PHL/Newborn/cahgo.htm


John Hopkins Medical

www.hopkinschildrens.org/specialties/category/pages/cah/index.html


Texas Dept of State Health Services

The ABC'S of CAH

www.dshs.state.tx.us/newborn/cahbroch.shtm

www.dshs.state.tx.us/newborn/hand_cah.shtm (I've used this one to explain my CAH)


Dr. New

www.newchf.org


Intersex Society of North America

www.isna.org

[Sunshine1]

Found this link from Wikipedia. I like that it has the whole ball of yarn for CAH. You can click on the terms of different CAH in the BIOCEMISTRY section and it will then take you to a more indepth page about each one.


http://en.wikipedia.org/wiki/Congenital_adrenal_hyperplasia

[sparklingdreams]

Thank you for the resources,

I gave some of those to my Doctor and hopefully help her get it, as in IS. Here are a few links I've gatherred myself:


http://www.cahsupportforum.com/
http://www.congenitaladrenalhyperplasia.org/
http://home.vicnet.net.au/~cahsga/
http://www.cah.org.uk/

[Sunshine1]

I thought that these links might help some people. CAH really isn't a zebra but really just a condition next to Addison's or Adrenal Hypoplasia.

[sparklingdreams]

The A.H. part isn't that big of a deal,

At least for most Doctors. It's the intersex birth parts that we're having issues with. I'm not a patient who will just pull up her skirt and let everyone just probe around down there. Not now that I know I don't have to. Maybe this all might be a lot easier if I didn't have so many abuse issue, but I do, and so my intersex genitials, repeated abuse and mutilations, and my current attempts to get treatment often come into conflict with each other. I didn't mean C.A.H. is confusing from the immune system and adrenal system stand points. I unfortunantly, at 25, my genitals are at best still ambigious. Though my reproductive organs are still functional, 'down there' is just a mess, and that's were the confusion comes in.

[Kailana]

Hi all i dont hardly ever post in this thread, but
CAHourstories.org
was one of the first support sights i used to go to, I left though over a debate with a father over whether his daughter was intersexed or a normal girl. I dont want to go into too much detail but eccentually he believed in surgery and i didnt unless she wanted it. Long heated arguement and nasty emails. So i left, but lots of good people there too. I havent been there in a couple of years. But tons of info being tossed around.

[Sunshine1]

All great links to help people understand CAH.

[Sunshine1]

Adding more to first post.

NADF- National Adrenal Disease Foundation

www.medhelp.org/www/nadf


Mayo Clinic

www.mayoclinic.com/health/congenital-adrenal-hyperplasia/AN01040

[Sunshine1]

I hope all these links were of benefit for futher understanding what CAH is and will add more from time to time. "CAH- not really a zebra"

I have to go - the future is coming on.

[Sunshine1]

Another great group to learn about.


Organization Intersex International

www.intersexualite.org/-16K

www. oii-usa.blogspot.com/-192k-oct10, 2006


I think all the links that I've posted in this thread - Give a broad spectrum and something for everyone.

peace

[sparklingdreams]

This is why I support the D.S.D. model,

Intersex no longer reflects how most people born with any of the D.S.D.'s feel. I'm in no way saying anyone should be forced to feel, live, and identify as just female or male. But the absolute truth is that almost everyone does. Even those born with any of the D.S.D.. Almost all of us do simply identify as female or male, not as Intersex, ThirdSex, GenderQueer, or any of the other types of Two Spirit labels.

I'm female, and just because I was born with a D.S.D. doesn't mean I'm a third sex, nor should I be forced into that group. No one involved with the D.S.D. Consortium wants to forced trans, or third gendered people, into a two gendered world. We're simply trying to develop medical guidelines and clinical treatments that don't lead to life long trauma.

Nor are we connected with "The Network on Psychosexual Differentiation", though some medical professionals may be associated with both groups. As far as I know that is not the case.

The IAIA completely misrepresents the entire D.S.D. model & the Consortium. They didn't even correctly display the abbreviation. D.S.D. stands for Disorders of Sex Development. Not in any way or at any point has, or does, it stand for Disorders of Sexual Differentiation. In fact none of our goals, guidelines, or work is around anything sexual. The IAIA is simply spreading misinformation, either from their lack of knowledge or out of misplaced anger.

The Consortium of Disorders of Sex Development is comprised of medical professionals, adults living with any of the D.S.D., and family members of those born with any of the D.S.D.. So why are so many Intersexed people attacking us, we're not even involved in the same realms of change.

Groups like this new little IAIA is focusing on social changes to effect some change allowing for a third sex. Well no matter how much it upsets any third sex person, most people born with any of the D.S.D. don't fit into a third sex group. For those that do, if their born with any of the D.S.D. or not, their energy would be better focussed working with the trans movement instead of attacking the D.S.D. group.

We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%. More than a lil perspective is needed here, and those against the D.S.D. model, are missing the point that if their methods are having any impact it's simply set back any work they may have done. The D.S.D. group is not against or in conflict of the 'Intersex / Thirdsex / Trans' movement, we're in completely different camps. And attacking us is only going to further perspectives of those like Dr. Baily.

[prince....ss?]

This is your quote from a while back.

“I won't be able to live if I find out I'm some sudo-whatever... I can barely look myself in the mirror. I just end up crying or throughing up. My brain is just shutting down, this is to much, I just don't understand why this is happenning, or what I am, I'm just back in the Doctors hand to figure it out, if they even can.”

Perhaps this is why you support the D.S.D thing. You apparently feel that you are in the 98% being CAH. I on the other hand am in the 2% and one of the sudo-whatever’s as you put it. So lets just help the 98% and not worry about the 2%, after all they aren’t important, beside they will only want to end their lives or spend all their time crying or throwing up.

So if you want the D.S.D thing that’s great, just leave my sudo-whatever out of it. Don’t force my inclusion in something that offers me nothing.



Prince….ss?

[sparklingdreams]

This is your quote from a while back.

“I won't be able to live if I find out I'm some sudo-whatever... I can barely look myself in the mirror. I just end up crying or throughing up. My brain is just shutting down, this is to much, I just don't understand why this is happenning, or what I am, I'm just back in the Doctors hand to figure it out, if they even can.”

Perhaps this is why you support the D.S.D thing. You apparently feel that you are in the 98% being CAH. I on the other hand am in the 2% and one of the sudo-whatever’s as you put it. So lets just help the 98% and not worry about the 2%, after all they aren’t important, beside they will only want to end their lives or spend all their time crying or throwing up.

So if you want the D.S.D thing that’s great, just leave my sudo-whatever out of it. Don’t force my inclusion in something that offers me nothing.



Prince….ss?

I don't want to force you into any model,

If you feel like you're a pseudo-hermaphrodite (which I'm only using that term because you've used that in the past). it's like I've been trying to say we have two different issues here. I have the deepest compassion and understanding for those who feel the world needs to be more accepting of those that fit outside of the sex and gender norms. These issue are socially, emotionally, and for those born with one of the D.S.D. - physically traumatic.

My point is that the D.S.D. is not trying to continue that trauma. It's simply not the platform for these issues. I would love to see a group, like maybe even the I.A.I.A., focus on the issues you and others here have to deal with. But I don't feel attacking those of who have to deal with similar but different issues.

We may all suffer from similar mutations -or- differences of our sex organs from birth but how we feel about them is very different. For most of us, all we want is to be accepted and let to live our life in what we feel is our correct sex. We feel that way with just as much passion and heartfelt pain, as you do about needing to be accepted as feeling outside those norms.

The I.S.N.A. & D.S.D. Consortium are just trying to put in place the changes we really need with in the medical establishment. So many need these changes, we need to feel accepted. We need the shame and secrecy destroyed. And mostly we need to be free to be the women and men we are.

I know that doesn't fit your needs. So why can't an organization like B.L.O., I.A.I.A., or any of the other groups that don't feel their needs are met by the D.S.D. model, begin doing something about. But without attacking those of us who do need the D.S.D.. We don't want anyone left to live in pain. But our needs are different and so the approaches have to be different.

I would love to see an organization work toward the changes you need. But you can do so without attacking our needs. Needing to feel normal within a female/other/male context. Making a change toward adopting a third sex/gender is fine. But doing so doesn't have to mean destroying or attacking those of us that fit into the binary construct. So work toward the changes you need, but do so without being so upset with those of us that have different needs.

The D.S.D. model has been built with tremendous input from people born with D.S.D.. We've built these guidelines ourselves based on our needs. So why not start developing Guidelines for yourselves. How about:

'The hows, whose, and whys, of Intersex people who need no treatment.'

Like the I.S.N.A. wrote in DSD But Intersex Too: Shifting Paradigms Without Abandoning Roots (http://www.isna.org/node/1067). So the D.S.D. model doesn't help you, and maybe it even hurts you. But there is no need to try and destroy the D.S.D. which will & is helping so many born with ambiguous sex organs. Instead make the changes you need outside of the D.S.D. movement. We need changes made & so do you but they don't, & can't, fit under the same umbrella.

So it's time to see your movement grow and make changes. Include those born with normal sex organs who see themselves as outside the sex norms. But just please do it without attacking those of us who feel within the norms (as they currently are).

I guess what I'm trying to say is there can be a world where people can live happily as females, males, and other (which term you agree on). But our needs as women and men shouldn't be invalidate for your needs... nor should ours be destroyed for yours. So I feel for you that you feel your voice isn't being heard. And I hope it will be, but can't it be done without being against us, use your voice to speak out for yourselves instead of against us. And then I believe you can have the changes you need.

Our needs are clearly different, but we're not against you, and hopefully you'll realize that.

[miriam]

We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%. More than a lil perspective is needed here, and those against the D.S.D. model, are missing the point that if their methods are having any impact it's simply set back any work they may have done.

That proves you have no idea what you are talking about. Real peer support excludes no one from support. I represent 158 paying members of the Dutch AIS support group. Not just 98 percent of them.

Katie, it is too easy say that everybody who disagrees with you belongs to the 2 percent you want to trash. In the Dutch group we will discuss the new initialism DSD with our think tank. I can tell you already that no medical professional in the Netherlands will use it if we decide that we don't like the inisitialism.

In my opinion the initialism has already caused a lot of damage. Many people involved with real peer support are now discussing whether or not to endorse the initialism. Instead we could have discussed the ways patient groups want to be involved in new studies.

Groeten, Miriam

[sparklingdreams]

That proves you have no idea what you are talking about.
...

Katie, it is too easy say that everybody who disagrees with you belongs to the 2 percent you want to trash.

I don't understand what you see when you read my posts,

But you clearly miss any point I ever try to make. As for true speer support reflecting all of it's members. While that ideal is lovely, it's impossible. Especialy when talking about a base as broad as those of us born with D.S.D.. We don't all want or need the same things at the same time. I'm not saying these needs are not in some way eventually compatibly, but no one will ever agree 100% so your argument is moot.

Secondly, I have never trashed any one, or group, here or elsewhere. Just because I disagree with some one, who in turns disagrees with me, doesn't mean I'm trashing them.

You have an incredible abbilitity to filter out just what you want to see from what I type. So why can't you either open up and actually read my full postings or stop trying to make me seem like a vilian. I just feel differently than some here, but not all, I don't see either sides as being invalid or even in conflict. And for someone who tub thumps so much about embracing different people and sexes than I don't understand why you can't accept different opinions.

[miriam]

I don't understand what you see when you read my posts,
It's quite obvious that you don't understand what you write, but I can tell you what I see when I read your post: a lot of words that don't make sense, mixed with ad hominem fallacies.

But you clearly miss any point I ever try to make.

This is the point you made: "We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%." And that's why I said that you trash those 2 percent. If they have a DSD they have a DSD and not a shut-up-because-I don't-like-your-point-of-view-DSD. Besides... if there would only be 2 percent who reject the initialsm DSD I bet that you would not hear so much about it.

As for true speer support reflecting all of it's members. While that ideal is lovely, it's impossible. Especialy when talking about a base as broad as those of us born with D.S.D.. We don't all want or need the same things at the same time. I'm not saying these needs are not in some way eventually compatibly, but no one will ever agree 100% so your argument is moot.

In that case you simply should not use an umbrella term. It's not about to agree or not to agree. It's that many people don't want others to use the initialism DSD as an umbrella term for THEIR condition. When you say "We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%." you try to assimilate the 2 percent. And I doubt it's true that 98 percent of the people with a DSD want use the new umbrella term. If you would visit the letters-to-the-editor section of the article about the Chicago Consensus Meeting 2005, you'll see that many intersex activists don't like the new term.

And... peer support reflection all of the members in a group IS possible. It requires that you focus on peer support instead of a new umbrella term. In our group we have many different conditions with sometimes completely different experiences, but when it comes to support we are a real PEER support group.

Secondly, I have never trashed any one, or group, here or elsewhere. Just because I disagree with some one, who in turns disagrees with me, doesn't mean I'm trashing them.
Yes, you did trash them when you said: "We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%."

You have an incredible abbilitity to filter out just what you want to see from what I type. So why can't you either open up and actually read my full postings or stop trying to make me seem like a vilian. I just feel differently than some here, but not all, I don't see either sides as being invalid or even in conflict. And for someone who tub thumps so much about embracing different people and sexes than I don't understand why you can't accept different opinions.

Easy, I don't want you to think that everybody believes what you are writing. You are not a villain. You are a woman who tries to make the world a bit better for herself. It's a pity that you need a lot of nonsense for that. e.g your "98 percent" is not a fact - it's an opinion that you try to bring as a fact. Your vision on genetics is not based on facts - it's an opinion (or personal interpretation of the facts) that you try to sell to other people as being a fact. THAT's why I will not stop to tell you that your 'opinions' suck. Unlike you, I’m attacking your point of view and not the woman who I’m debating with. Grow up, Katie.

Groeten, Miriam

[sparklingdreams]

It's quite obvious that you don't understand what you write, but I can tell you what I see when I read your post: a lot of words that don't make sense, mixed with ad hominem fallacies.
.........
Unlike you, I’m attacking your point of view and not the woman who I’m debating with. Grow up, Katie.


I've never read a more conflicting,

And personally hurtful posting from you. You most definatly do attack
me and my perspectives on D.S.D. vs. doing nothing. I see D.S.D. as a treatment model. Where as, I'm starting to realize that most everyone here sees it as something more.


If it was only 2% percent who reject the initialsm DSD I bet that you would not hear so much about it.

I only here about it here. Other mailing list & only D.S.D. groups I belong to aren't in such complete opposition to the new D.S.D. treatment model. Even though some do have lil improvements they would like to see made, the over all view is that its much improved over the current and past treatment models.

Than of course there is the vast majority of those born with some D.S.D. who are simply living their lives, and don't spend any time focussing on which ever one of the D.S.D. they have. This was how I lived most of my life, and in reference to this discussion at B.L.O., how I'm going to spend my time online. Any discussion of the D.S.D. here is simply pointless and is not helping either side of the issue.

In that case you simply should not use an umbrella term. It's not about to agree or not to agree. It's that many people don't want others to use the initialism DSD as an umbrella term for THEIR condition.

I'm not sure why having our conditions placed under an 'umbrella' term is seen as such an evil thing. Cancer and Dystonia (http://www.care4dystonia.org/) are umbrella term. Each type is very different from their cause, symptoms, and severity. Almost all medical conditions fall under some umbrella term. Usually based on one common connection. For Cancers its uncontroled cell growth. With Dystonias its our uncontroled muscle spasms and contorsions. For D.S.D. its ambigous sex organs. Its how sciences all work, from medical, psychological, physics, archeology, and paleotology (spelling?). Maybe its because I suffer from Early-Onset Generalized Dystonia (http://www.dystonia-foundation.org/defined/early.asp) which is a disease, and Dystonias are considerred disorders / syndromes, that I'm not so against, offended, upset, or afraid of the 'disorder' part of D.S.D.

Yes, you did trash them when you said: "We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%."

I made this statement in response to prince...ss' statements reguarding being of a 'third, or other sex'. I was hardly trashing anyone. But, again, the D.S.D. model is nothing more than a guideline for medical treatment and so many here are hearing it as, or turning it into, something. Something else, something social and political, which it just isn't, its just supposed to be a medical guideline. Its not meant as personal label.

Easy, I don't want you to think that everybody believes what you are writing. You are not a villain. You are a woman who tries to make the world a bit better for herself.

As if! Like anyone who spent even five minutes reading any thread here wouldn't be fully aware of how unpopular my opinion is here. How ever I'm far from alone in my support for the D.S.D.. I just seem to be the only one here at B.L.O. who is. But there is a large group of support behind the new D.S.D. model. Our positions will appear on the I.S.N.A.'s website, to show there really is support for this new model of medical treatment.

It's a pity that you need a lot of nonsense for that. e.g your "98 percent" is not a fact - it's an opinion that you try to bring as a fact. Your vision on genetics is not based on facts - it's an opinion (or personal interpretation of the facts) that you try to sell to other people as being a fact. THAT's why I will not stop to tell you that your 'opinions' suck.


I was not saying this about support for the new D.S.D. treatment model, but about prince...ss statement reguarding being something other than female or male. And what I said in that reguard is not an opinion, but is obvious fact. Its simply true, a fact, that, 98% if not more, of people born with any of the D.S.D. identify as female or male. Not as any third sex. Taking my statements out of context is something you're very good at.

for your statement about my knowledge of genetics, I can only assume you're referring to my rather old post in regards to my personal fears and confusion about conflictingKaryotype tests, an issue which has been figured out. However I am fully aware of the complex interplay of genes in impacting ones sex development. And that it is far more complex than just an XX or XY chromosome. However 16 years of brutal rapes and beatings can over rule any science, or even common sense. I also only made those statements toward myself. Points I made perfectly clear in my posting. Its to bad that if the lies and self haterred that were beat into me effected you so much that you cannot feel compassionate, but truly feel anger toward me for what I mentally know to be false, but after so much abuse, emotionally I still fear those lies to be true. Other than that I made no statements reguarding genetics.

So what you said, like most your replies, to myself and others seems to be nothing more than a flame. And I won't continue to be a part of what has become your personal flame war.

[kate.pixiecat]

I've never read a more conflicting,

Any discussion of the D.S.D. here is simply pointless

If it's pointless, what are you still posting for? Do you have a point?


Almost all medical conditions fall under some umbrella term. Usually based on one common connection. For Cancers its uncontroled cell growth. With Dystonias its our uncontroled muscle spasms and contorsions. For D.S.D. its ambigous sex organs.

I think a distinction needs to be made here... I'm sure that people *universally* want to be free of cancer, or dystonia. *Not* everyone wants to be 'free' of their IS condition, whatever it might be. Maybe you do, and maybe you see a 'disorder' that you'd like 'cured'. I see 'order', just not the two kinds of order that certain people seem intent on forcing on 2% (where did that number come from anyway?)


"We can't reflect the desires of 2% of those born with one of the D.S.D. over the needs of the 98%"... I was hardly trashing anyone.


You are saying that these '2%' don't matter... as long as we look after those who see themselves as disordered, we don't need to worry about the ones that don't. You're throwing people in the bin, discounting their voices as not needing to be heard. That's trashing them alright.


As if! Like anyone who spent even five minutes reading any thread here wouldn't be fully aware of how unpopular my opinion is here. How ever I'm far from alone in my support for the D.S.D..

Much of your postings here on BLO have basically consisted of dismissing anyone who disagrees with you regarding DSD. If you have so much support behind you why do you need to come on here shouting as loud as you can and then shouting even louder when someone points out that you've just offended them?


I was not saying this about support for the new D.S.D. treatment model, but about prince...ss statement reguarding being something other than female or male. And what I said in that reguard is not an opinion, but is obvious fact.

Its simply true, a fact, that, 98% if not more, of people born with any of the D.S.D. identify as female or male. Not as any third sex.

1) Please state your source - I'm interested in this research and have not heard of it before.

2) So the DSD guidelines need only cater for those who identify totally male or female (and their identity matches their assigned gender), and not those who are outside that scenario? EFF YOU! :pissed-2:

I wish you could just learn a bit about fairness rather than wanting the world to provide what you feel most comfortable with and sod everyone else.

[Kailana]

Sparkling dreams, I really appreciate your views, I havent been trying to knock or make you change your mind. Well, maybe just a little. The thing is, i have alot of issues with what is proposed in the DSD standards, Yes i see many improvements. But, what about us, not just me, all of us. how much crap have you, me, us have had to go threw, how hard has it been for you wondering why? how come? when?

Me i still see way too much being left out of the new standards. So what should they get ennacted, used as the new standards of care, where does that leave me, or anybody else for that matter. I see the biggest problem, with them as there really isnt any provision in them to fix what Doctors have been doing to us for years. So the new generations will get better care, if you read the treatment standards proposed, for all of the conditions not just yours, You would see that really nothing has changed. snip, snip, stitch, stitch, A boy, A girl. Choice still taken away, maybe not for all of us, but for some. You have to read the handbook, just to get a glimpse that there may be help if a child is reared/assigned wrong. Don't you have any idea how many Doctor's will ignore the handbook. They will look a the new standards and say, well right here it says remove these and make a boy. They wont bother to read the handbook for parents. They, doctors, wil read "well the ISNA says we support doctors doing this to that kind of child, so they will do just that, regardless of the childs interests. They like you will quote opinion's rather then facts. With all the people here, can't you see just how varied we are in how we express our gender.

As far as umbrella terms go, that is what the term Intersex was.
And that angered quite a few people. Using another term with even a more vague acronym? such as Disorder isn't any sort of form of progress. Now we become nothing but a medical disease, a condition. At least as an intersexual i am still acknowledged as a person.

[Sunshine1]

It is my hope that the spectrum of links that I provided will provide help for all that have CAH or are looking for info to futher learning about anything that might have to do with CAH. The links have something for everyone.

peace

[Sunshine1]

The link didn't work but maybe this one will.

www.intersexualite.org I like the art work and poems from this site. and that the people actually have the conditions. Not to say that ISNA doesn't have something to offer as well. The one endo is so cute in a geeky scientific sort of way. I love the hair and he can feed me chesse anyday ...munster cheese he can feed me munster cheese- The endos did listen to me but that isn't the group for me .....no group is really for me - I don't really fit anywhere : ) not even with the cares foundation but I love what they do for CAH. I also hope that the medical links will help someone learn more about CAH.


All the links that I posted are from a wide spectrum and something for everyone.


peace

[Sunshine1]

Hi Research Peeps,

It is my hope that all you would really read all the links that I've provided to learn what Congenital Adrenal Hyperplasia actually is.

[sparklingdreams]

But, what about us, not just me, all of us. how much crap have you, me, us have had to go threw, how hard has it been for you wondering why? how come? when?

Me i still see way too much being left out of the new standards. ... They like you will quote opinion's rather then facts. With all the people here, can't you see just how varied we are in how we express our gender.

First I agree much is missing from the new D.S.D. Guidelines,

Mainly I personally wish that there was a way to ensure 100% our gender and we could all be raised in peace. And I do believe that someday science will figure out enogh of the genetic stuff so that's possible. Though that is prolly something thats like next century.

Aside from that I kinda understand, and feel too, why most others here would wish both the Clinical Guidelines and Parental Guidelines suggested assigning and raising each child, born with any of the D.S.D., without trying to mold them into either sexual binary until we begin to express our sex / gender identity and until then we could be raised without attempts to make us fit in socially to what may be like a totally incorrect gender assignment. I mean like as-if Doctors, parents, or any body can just like assign someone's gender! Like OMG like any body, other than we ourselves, have any right to guess and then force that guess on us.

But my feelings aside, I have to be realistic about the world & especially our country and society. That wish just isn't possible right now. If that suggestion were in the Guidelines at best it would result in the Guidelines being ignored. At worst it would result in the child being raised as I was, as some third-sex. Or like more accurately in how I was raised, I was treated as something non-sex / non-human. Rarely, if at all, would parents be able to correctly raise us decently. At least the guidelines attempt to help stop children from being raised like I was.

And they do address other situations, other than mine (I'm like assuming you're talking about which of the D.S.D. I have being C.A.H.). And in all cases the clinical guidelines pretty much insist on any cosmetic surgical sex / gender assignment NOT being performed:


Clinical Guidelines for the Management of D.S.D. in Childhood (http://www.dsdguidelines.org/htdocs/clinical/index.html)'s - Timing of Surgeries (http://www.dsdguidelines.org/htdocs/clinical/timing_of_surgeries.html):

...
Genital cosmetic surgeries are sometimes offered to relieve parental distress, but parental distress should instead be addressed directly through peer support and competent mental health care. In providing this care for parents, teams show respect for parents and their children. A combination of reassurance and education will help to reduce the family’s early negative reactions to the condition while allowing them to honestly discuss their concerns and questions.

Past practice favored the use of surgery to reinforce initial gender assignment. This included operations aimed at making genitalia look more cosmetically normal and the removal of gonadal tissue at odds with the initial gender assignment. For the following reasons, the emerging approach calls for delaying elective surgeries until the patients themselves can participate in decision-making:


...
...
Operations designed to normalize genital appearance may undermine the multidisciplinary team’s central message to the parents that the child is unconditionally acceptable and lovable.
...
Allowing a patient to make decisions about elective care signals to the patient a fundamental valuing of his or her autonomy and person hood.


Healthy, functioning gonadal tissue should remain in place unless the patient, fully advised of risks and options, requests it be removed. Improving reproductive technologies may make it possible for patients now considered infertile (e.g., women with CAIS) someday to contribute to procreation (e.g., through sperm aspiration, IVF, and surrogacy). Removal of healthy gonadal tissue leads to loss of potential fertility and the loss of the benefits of endogenous hormones (e.g., prevention of osteoporosis; many women with CAIS report a loss of libido and sense of well-being after gonadectomy), and should therefore happen at the will of the fully informed patient. Note that gonadal tumor risk varies with etiology; the risk is highest in PAIS, and lowest (< 5%) in CAIS and ovotestes.



These suggestions are clearly, at leas to me, far better than, the current standards. Which are basically just guess and cut along the dotted line. So, yeah they may seem like a small step, but to me they feel like a huge step forward.

And I don't quote opinions, I do state my experiences', and quote from sources (which I almost always link to reference).

And sorry I've been gone so long my laptop crashed and ended having to be sent back to Dell to get fixed. It broke when, because of my G.D., I had a major spasm and fell out of bed when I was asleep, at like 3am, though I have like no idea how it broke my laptop. But now I'm back to be the only voice in like major favor of the D.S.D. Guidelines, which I'm like always gonna like stay, unless something major is changed in them.

[Sunshine1]

My goal is that this thread will explain CAH info and i hope you find the Links for CAH helpful. Each condition has things that are specific to themseleves and one of the reasons for this thread was a doc that confused medical conditions and that contributed to my other medical conditions not being diagnosed in a timely manner.