| CARES: Congenital Adrenal Hyperplasia |    |
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Curtis
CAH Resource
Age : 56
Joined : 15 Jul 2007
Posts : 555
Location : USA
|  Subject: CARES: Congenital Adrenal Hyperplasia  Mon Nov 12, 2007 9:46 pm | |
| CARES
http://www.every1cares.org/
I have reservations about this group which are ethical and moral. I do not like the fact that this group is basically NOT by people affected. I have issues with pre-natal screening when abortion is presented as a "solution". I also do not agree with early "castration" - that is what I call it.
However, for medical information about the endocrine disorder, it is a good place to start. For actual ethical issues, not reccommended.
_________________
Beaming rainbows of hugs,
Curtis
http://tinyurl.com/2kv4dw |
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Peggy
AIS Resource
Age : 54
Joined : 17 Jul 2007
Posts : 47
Location : New England
| | Subject: Re: CARES: Congenital Adrenal Hyperplasia Tue Nov 13, 2007 10:58 am | |
| Greetings, gracious gixers,
Curtis wrote,
| Quote: | | I have reservations about this group [CARES] which are ethical and moral. I do not like the fact that this group is basically NOT by people affected. |
I know Kelly, the woman who founded and runs CARES, who is the mother of a girl with CVAH. Yes, her opinions are not those of most intersex activists. I don't share all her views, (but for that matter, I don't share all yours either). I do think she is a reasonable and open-minded person and her information is well researched.
You have pointed out the dilemma of groups that try to combine support and advocacy, which is that any opinions or ideas they promote will be in conflict with those of some persons who would otherwise be potential members, supporters and/or beneficiaries of their support and resources. That is why, when I was active in AISSG-USA I discouraged politicization of the group and tried to get it to focus mainly on providing support and information.
| Quote: | | I also do not agree with early "castration" - that is what I call it. |
Do you mean adrenalectomy? As I understand (keep in mind that I don't have CVAH and am not the greatest expert on the condition) the idea is that the dose of glucocorticosteroids (like cortisone) required to completely suppress virilization from adrenal hormones in a child with CVAH is higher than what would otherwise be an optimal replacement dose, so there can be health problems from either excess cortisone or from incomplete suppression of the adrenal glands.
Do you mean instead removing the ovaries from an XX child with CVAH growing up as a boy? I can see where this would be controversial for a number of reasons. I've discussed this with Kelly and she has reservations about it herself. One thing I've observed is that non-intersexed FtM transsexuals really do not like having female pelvic organs (ovaries and uterus) and want to get rid of them as a matter of principle but I'm not sure whether IS persons who are XX but living as men feel the same way.
_________________
Friendly greetings to all,
Peggy
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"One voice speaking truth is a greater force than fleets and armies."
Ursula K. LeGuin, from "The Left Hand of Darkness" |
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Curtis
CAH Resource
Age : 56
Joined : 15 Jul 2007
Posts : 555
Location : USA
| | Subject: Re: CARES: Congenital Adrenal Hyperplasia Tue Nov 13, 2007 11:10 am | |
| These are my views. You are free to have your views.
I often use the word "castration" to include removing a penis. That is NOT accurate, I know.
However, cutting people up is a little too accurate, in my opinion.
By the way, the age recommended for these "surgeries" is between 2 and 6 months. That is linked to from their site.
_________________
Beaming rainbows of hugs,
Curtis
http://tinyurl.com/2kv4dw |
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Andre
XXY Resource
Age : 46
Joined : 09 Jul 2007
Posts : 1416
Location : Montreal, Canada
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Curtis
CAH Resource
Age : 56
Joined : 15 Jul 2007
Posts : 555
Location : USA
| | Subject: Re: CARES: Congenital Adrenal Hyperplasia Tue Nov 13, 2007 11:56 am | |
| I want to make it clear that I feel that it would be irresponsable for me as the CAH-Resource person to provide this link without being honest.
The statements above are facts except my opposition to recommending abortion in cases of CAH. I have moral opposition to this and I feel that many people do. Such opposition or support should be freely expressed and discussed.
I am sorry that I don't know how to get in either. If you find out, let me know.
I do wish to be non-political and provide the link because the health information about the endocrine condition is good. However, a large number of "females" with CAH have serious issues with this organisation and I feel that I must present those to avoid serious controversy in this list and elsewhere.
People will come to different ethical and moral conclusions. I will disclose mine here, so that people will know that I do have a bias but not to the degree that I would advise people NOT to read this site.
1) I am opposed to early surgeries without consent unless there are actual health risks.
2) I am opposed to eugenic abortion.
3) I am opposed to the idea that all XX's with CAH are female.
4) I am opposed to gender normalisation without consent
This particular group is not opposed to these. I read the information on this site myself. I would recommend that other people interested in CAH read it. Each person can make up their own mind.
_________________
Beaming rainbows of hugs,
Curtis
http://tinyurl.com/2kv4dw |
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Andre
XXY Resource
Age : 46
Joined : 09 Jul 2007
Posts : 1416
Location : Montreal, Canada
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Curtis
CAH Resource
Age : 56
Joined : 15 Jul 2007
Posts : 555
Location : USA
| | Subject: Re: CARES: Congenital Adrenal Hyperplasia Tue Nov 13, 2007 12:14 pm | |
| I agree André. However, linking to a site as controversial as this site is to many people is NOT a good idea without expressing your actual position. There are other people here with CAH and I assure you that I want to remain friends with them. LOL
_________________
Beaming rainbows of hugs,
Curtis
http://tinyurl.com/2kv4dw |
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| CARES: Congenital Adrenal Hyperplasia | |
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