help with book

[gncallahan]

Hi,

I am currently working on a book tentatively titled The Mismeasure of Sex which Chicago Review Press will publish in 2008. A portion of that book focuses on issues of intersexuality, androgen insensitivity, congenital adrenal hyperplasia, sex chromosome differences, and related matters. I contacted Jan Goto at ISNA and she suggested that I contact support groups for more information. I am very interested in speaking with a person or persons who are living with these conditions. My reasons are that I think as part of the book, it would be wonderful for readers to hear from these people in their own voices. The main purpose of the book is not to suggest we need more sexes, but rather how we might all benefit from a change in the ways we think about sexes and what is usual or unusual. As part of my project, speaking with someone who is experiencing any of these as a way of life would be especially important and useful to me. My only interest would be in providing this person or theses persons with an opportunity to express their feelings about their lives in ways that might help to educate all of us. Anything that I attributed to anyone I spoke with would be available for review and correction before publication. I have attached my current table of contents to give you a better idea about the breadth and depth of the book. If I can do anything further to convince you of my sincerity, please let me know. Thank you very much for your time and consideration.

Gerry Callahan

[Sunshine1]

CAH = ADRENAL GLAND CONDITION AND HAS NOTHING TO DO WITH MORE SEXES.

It is frustrating being used by people to be the example of " how we all benefit from a change in the ways we think about sexes and what is usual or unusual" and "the might help to educate us all" I'm not different from you and when will you people stop making these conditions oddities.

Do you know what an adrenal crisis is or can you tell me what is going to happen getting older with a defect of an adrenal gland?


Please talk with the people on board at this organization http://www.caresfoundation.org

Only a small percentage of people with CAH even fit the medcial description of intersex as defined by the Intersex Society of America.

I also hope that you are going to confirm that that people in your book actually have one of these conditions.

[gncallahan]

I am sorry if you feel I am singling you out. But each of us is different in important ways. And I feel that the only avenue to understanding and appreciating, even valuing these differences is to share them in useful ways.

I do know what adrenal crisis is. I do not know what role aging plays and since I am not a physician, I hestitate to offer anything except that I think individual differences play a major role.

Here is a website you might find interesting. http://www.caresfoundation.org/adrenalcrisis.html

Do you have any suggestions about how I might verify any information I receive through forums such as these.

[Andre]

You must be aware that many have come in the same hopes as you, Gerry, and nothing was heard of again or information has been ill written from people that put thier own opinion onto subjects dear to us. A lot of hopes were dashed because of this.

I would suggest you be patient and immerse yourself into the feel of this site, you may find many who would be accommodating. No one wants to be a test subject, there was/is enough of that already.

As well, when you go and see other posts written in the first person of thier lives, it would be prudent to ask whether that can be used in your book.

A lot of us have had bad experiences and share them with others who have had them as well, certainly one that does not have one of the conditions you mentioned would find that either hard to believe or exaggerated. I assure you, they are not.

Andre

[Kailana]

Hiya there. First of all, let me say, that not all of us think as Sunshine, many of us Identify as intersexed, just as many do not. So your gonna get a mixed message i think, when publicly asking for help on intersexed related views.

As for a volunteer, well I would love to chat with you. I believe each of our history's is important. My own, well i just wish the medical community would actually just acknowledge it. I have been told my many its just the little rinky dinky little city I live in, that seems to be so uptight about Identifying or caring about what they say, or how they treat me. Just to let you know, I am in fact Intersexed. Diagnosed in 1993, during military service. Initially CAH, and later Karyotype, xy/xo. What the military, says i am is male/female true hermaphrodyte. <---- that is my diagnosis, but for some reason Non of my local doctors will acknowledge any of that. If you want someone who is willing to share, well here I am. My knowledge, while not perfect, isn't so bad. I do understand what it is like, being well different. As for people in general, i actually get treated really well, only issues i have is in fact with my direct family(parents, siblings), and local Doctor's, the rest of my extended family is pretty much ok with me, most have known more about me then i did. Even my two surviving grandparents are more open and honest and accepting of me then my parents are.

I am also quite curious to see your book, that has more interest for me then anything else. Basically most books that i have read so far, pretty much gives the tongue and cheek versions of what it is actually like to be I.S. Or to be raised as the gender opposite, to there genetic sex. I would really love to see/read what is actually typed, concerning, people like myself, who are infact truehermaphrodytes, and what it is like for them, not acknowledging one specific gender, but both, or if they are like me, who were raised as one gender(male,me), but choose to live as the other(female,me), cause i really would love to hear about more people like myself, I basically think Dr's, Surgeons are incompetent morons, All that was done to me, all there efferts went to waiste, just because they asigned me male, doesnt make me male, and lastly and most importantly, didn't make me happy. then again perhaps constantly being asked by doctors and family if i was happy as a boy, and me telling them no i am not, i should of been a girl, and everyone ignoring me, caused even more problems then should of been forced onto me.

Gee, i really could go on for hours. But last thing i want to say is and this is especially important concerning Sunshines views. Not all of us have an easy time being diagnosed as anything. Often many of us including myself, our records are refuted, what some doctors will acknowledge others wont. Which just leads too more problems being diagnosed and accepted within the medical community and within the IS community.

[peaceandparty]

i completely understand sunshines dismay and anxiety to do with this post

and i want to know more
sunshine......can you start another thread and tell me what pisses you off the most!?

thanks
keep the sunshine in our everyday lives

peace be with you...all

[Sunshine1]

I am sorry if you feel I am singling you out. But each of us is different in important ways. And I feel that the only avenue to understanding and appreciating, even valuing these differences is to share them in useful ways.

I do know what adrenal crisis is. I do not know what role aging plays and since I am not a physician, I hestitate to offer anything except that I think individual differences play a major role.

Here is a website you might find interesting. http://www.caresfoundation.org/adrenalcrisis.html

Do you have any suggestions about how I might verify any information I receive through forums such as these.

Dear Author,

I do know how to verify information and if I was wrting a book then I would. It's sad that you don't know the depths of these conditions but here you get to write a book and finding out if someone actually has the condition is something you had to ask for suggestions about. CAH IS A SERIOUS MEDICAL CONDITION .....an adrenal gland condition.

Did you call the http://caresfoundation.org? from my fist post to you as that is our national organization that can clue you in about what CAH is.

Yes, I know what and adrenal crisis is .....I've had them and was asking to find if you knew anything. I'm glad that you looked at the link.

Cah is a complex condition and keep in mind that medicine changes and moves forward. Women with CAH have their husbands children and men with CAH have trouble with this condition but nobody writes about that.

I found your book outline nothing more than wanting a freak show and keeping us on the level of animals as well.

I don't feel you are really listening to what people have to say and if I was an author it would make a difference that someone actually has this condition or others ...

I have an adrenal gland condition and lack the ability to make cortisol so your title the mis measurement of sex ? wtf ?

I looked at your profile and you're an immunologist? So can you help me get rid of hand warts as my immune system isn't the best. i also have Celiac Sprue and Hashimoto's thyroiditis .....can you tell me what those do to my immune system?

I could be a space alien as nothing is certain.

What about having CAH do you think is different and why do you think it isn't like a thyroid condition? Why do you think CAH has to do with SEX .......hummmmm I lack cortisol AKA FUCKED UP adrenal gland. I have a degee in a "female" dominated area and getting another degree in a "female" dominated area.

People with CAH aren't any different then other people but I think you want to assume things .....

[gncallahan]

Sunshine,

I agree with you. The breadth and the depth of my ignorance are great. That is one of the main reasons that I wanted to write this book. When I discovered how little I knew about the all the varieties of sexual development, I was stunned. I wondered why so mony of us know so little, and I thought it might be a good thing if we (especially me) knew more. And I have learend a lot from books, but I think I can learn a greate deal more from people. I know one man who is XXY and one woman with AIS and they are helping to see more deeply into thier lives and mine. I do not believe in freaks. I believe in the wonders of this world and the miracle of humanity. I want to try and share that. The more people I talk with, the more colors I have to paint my book with. I don't blame you for being susp[icious and I understand, at least in part, why you don't want to speak with me.

My wife also has celiac sprue. The immune systems of people with this disease react to a piece of a protein called gluten. That reactioin crosses over and attacks the small intestine (as well, perhaps, as some other parts of the body). Celiac disease is caused by a genetic predisposition toward this overreaction of the immune system. Gluten is found in many grains, but the gluten found in barley, wheat , rye, and spelt is especially bad. For that reason, people with celaic disease must completely avoid these grains and their byproducts -- like beer and grain alcohols. That will usually eliminate most if not all of the symptoms.

Hashimoto's thyroiditis is another autoimmune disease that is often found in association with celiac disease. For unknown reason's the immune systems of persons with this disease attack their thyroid glands. That cause inflammation fo the thyroid and hypothroidism -- too little thyroid hormone. The symptoms can be helped by taking thyroid hormones, but there is no known cure. I would stongly reommed that you see botha rheumatoligist and and endocrinologist to find out how best to cer for yourelf. These are complex diseases that vary a lot from person to person.

I hope this is helpful.

I'll get back to you on warts.

Gerry Callahan

[Sunshine1]

You really don't know anything about CAH. I've seen an endocrinologist my whole life ...have to .....see born with CAH and this condition is life threatening besides affecting your growth . People WITH LOCAH might see someone latter. My endo that I have for CAH was the one that diagnosed the hashi's. The Hashi's is harder to treat because of the CAH.
You telling me to go to an Endo shows you don't know a darn thing.....sir I've seen endos my whole life as I don't make cortisol and need cortef perscription to live and yes to me your book outline is freak show seeking. Next section animals that give birth out of penises.. step right up

And you also told me basic info about Celiac and Hashi's that I've had for three years. I was looking for a different type of info.....a little more indepth as I thought you studied the immune system. The connection of Hashi's and Celiac is on the front page of the Celiac Sprue ORG I also am a three year survivor of andendocervical carcinoma.


The subject you want to write about has been done forever and it's proved false ala John Money and it's sad that you don't know for sure if someone has the conditions you are wrting about but yet you want their input .

The thing that really gets me is that your topic would make someone think if you used it in the realm of people that don't have any conditions.

People like you have been coming here all the time and I would like to know what you think CAH is?

If you want real info from real people about CAH please call the number on this site http://www.caresfoundation.org. Also get the numbers for Susan Baker and Sherri Brenbaum as they are into your topic and have interviewed people for years. Thank me for giving you their names as this is what you want for your book.

It's sad that nobody yet wants to write about CAH yet as the Endocrine condition that effects males and females but it's always good to look toward the future.

People with CAH run the gamet in gender expression and no different from those without CAH but you have a certain stereotype that you are looking for that sells books and the Mom with Cah that has four kids isn't your thing or that we have adrenal crisis and the educational info about this condition isn't taught.

I have a messed up adrenal gland and my sister without CAH is the one that can change car oil as I'm shopping.

And YOU are telling me these are complex conditions? SOMEONE THAT HAS NO IDEA ? Have you read any of my posts? You seem to be telling people instead of actually learning about CAH. Did you know that CAH is part of Newborn Screening?

Wonders of the world? Do you think diabetes is a wonder of the world? Would you like to be thought of as a wonder of the world(freak)?

I think you are dated in how you look at CAH and the topic as women are in all sorts of careers - do all sorts of things men do but you need to look toward these conditions when your topic really can stand on it's own. But, I go into an ER needing extra solu-medrol becuase I'm ill and nobody has any idea.

Gender is fluid and always has been. Also,the perception of gender is based on the needs of society at that given time period.


What about CAH do you think has to do with sexual development?



Why do you think my life is any different then your wifes?

Why do you think I has the answer to gender?


Why should I see a Rhuematoligist?