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AIS support groupFrom: Allen Gardner (allen.gardner@utoronto.ca)Thu May 7 10:51:23 1998
Greetings all, Following the electronic discussion about androgen insensitivity (in the ob-gyn forum but not the genetics listserv) Donna contacted me and I agreed to forward the thoughts of an AI woman and the organization she represents. Donna can't join this ob-gyn forum. If you have comments you'll be sending to the group please don't forget to copy Donna. Allen.
-- ============================================================== > >Date: Tue, 5 May 1998 15:17:31 -0400 >From: kidddo@aol.com (Donna Leary) >To: allen.gardner@utoronto.ca >Subject: AIS support group > >Dear Dr. Gardner, > >Thank you so much for calling me back last week. I would >be very happy for you to post this wherever you think it >might help get the word out about the support group. Would >you mind sending me an email telling me where you post it? >I would like to follow any discussions that take place. > >I know this is long, but I seem to be long winded about >AIS. I also think that doctors might benefit from hearing >as much of my story as I can put in an email. > >Best regards, >Donna > >---------- >As an AIS patient and one of the leaders of an international >AIS support group, I understand how difficult AIS can be. However, >those of us in the support group are living proof that AIS patients >can be told the truth about our condition and wind up being >stronger, more sensitive and more compassionate people because >of it. Most of us have spent time talking this over with >a counselor, our doctors, and even clergy. I am not saying >that this self-acceptance comes without a lot of hard work and >after quite a bit of suffering. However, it is our right to >know the truth about our lives. Any other option robs us of >our dignity and causes its own type of suffering. >Every woman I have spoken to with AIS feels that she >was hurt more by the lies, secrets, and half-truths told to us >by our doctors and families, than we were by the truth. This >secrecy has led to a great feeling of isolation and no >place for us to grieve the losses that we suffered. These >feelings were far worse for us than the knowledge of >testes and Y chromosomes. No woman in the group has ever >said that she wishes she didn't know the truth and all of >us have come to some level of acceptance of AIS. Most of >us who have not been told the truth, actively seek it out. >In today's world of open medical records and the internet, it >is almost impossible that a patient who wants to know the >truth about his or her condition will not find it out. >These seem far worse ways than learning the truth >from our doctors or from our families. The fact that >no one has told us the truth of our condition implies >to us that there is a great deal of shame about having >AIS. After all, if our parents and doctors couldn't bring >themselves to talk about this, we get the impression that >AIS is far worse than it really is. We take our clues about how >to feel about this from the way our doctors and parents >seem to feel. > >In my case, the first doctor who saw me told me I would >only keep "female characteristics" with enough estrogen. She >didn't explain my condition any further to me, but what >she said was enough to frighten me terribly and to make me feel >very apart from the rest of women. Other women didn't need >estrogen to "keep female characteristics." She >then took my mother into another room and told her I was really >"not her daughter, but her son, that I would virilize, need >a sex-change operation, and probably go insane." This was my >family's introduction to AIS! The shocking thing is I was >17-years-old; if I hadn't virilized, I certainly wasn't going >to. My orchidectomoy was done by very kind, compassionate doctors >who unfortunately thought it was in my best interest to lie to me. >They said my condition had no name and that I was having a hysterectomy. >I felt like the loneliest person in the world. In my mind, no one else >in the world even had what I had. I now speak openly about this and use my >real name because it is a way of refusing to accept the shame and >isolation caused by this silence. I do it primarily because it is good for me >to claim the truth of my life. It confirms for me that what was >done to me was wrong and that my doctors had more problems with >gender than I did or do. I hope it will help others--girls and >young women with AIS and also those adult AIS women who are living >alone in their thoughts, uninformed of their condition, or >so frightened by it, that they have never told even their closest >friend what they have. This shame is not ours and we should never >have been asked to bear it. > >I have spent most of my adult life trying to find out what >was wrong with me, what made my doctors and those around me hysterical, >and why I felt so alone. It took me 8 years to convince my >ob-gyn team to turn over my records to me. It turns out that >my geneticist destroyed my records. It is utterly shocking >that I was denied knowledge of my own body and health and >appaling that my family wasn't told of the inheritence pattern >of AIS and their risks of having affected children. We >had basic human rights to know the truth and to make >informed decisions about our medical care and our reproductive >choices. Our dignity and our integrity were taken from us. I >wish that my doctors had considered "First, do no harm." > >If I were a doctor who had to break this news to a young >patient, I know I would be very nervous about >how she would take the news. I would want to have spoken >to a mental health specalist who has experience with >gender/intersex issues and is prepared to take on >this patient if she should want counseling. I would also >want to emphasise that >* this patient is not alone >* this condition is known and understood >* there are other people with the same condition >* there is a support group available >* there are many intersex conditions that affect > roughly 1 in 2,000 people and >* there is a great deal of diversity in life and none > of it should be considered freakish or frightening > >Regarding gender, I urge all doctors to examine >their own thoughts on this. Obviously, my doctors, >especially the first one I saw, allowed some of their >own issues about gender to enter into my medical care. >Gender is defined by much more than a Y chromosome and >some internal testes that the patient has never seen. If >she calls herself by a female name, has been raised as female, >and is seeing an ob-gyn for her medical problems, she obviously >identifies as a woman and there is no reason for anyone >to think anything else. If her doctor believes deep in the >recesses of his or her mind that the Y chromosome makes her any >less of a woman than she was the day before her karyotype, >the patient is certain to pick up on that doubt. She is >going struggle with questions about gender in ways that >most people can't understand enough as she searches for >new ways to define what gender means to her. It is worse if she >feels that her doctors, her parents and others close to her are >questioning her gender. The truth is that that there is >more than one route to becoming a woman--there are XY women in >the world and there are XX men. I think those would be >perfect words to begin a discussion of AIS with a patient >or the parents of a young patient. I would urge parents to >develop a plan to tell their young AIS child the truth about >her AIS with age-appropriate details. By 10-years-old or so, >this girl must know that she will not get her period and will >probably not develop pubic or axillary hair. A little later >on she needs to know of her infertility. She must also >be examined for vaginal hypoplasia, understand it and have >her options explained to her, well before the age at which >she might wish to become sexually active. I would urge >parents to get counseling early so that they can resolve whatever >issues they might have before they have to deal with this with >their daughter. Birth defects do not happen to just one person, >they affect an entire family. I haven't even spoken of Partial >AIS which I see as an even more difficult situation, but which needs >to be dealt with as openly and honestly with families and patients >as does Complete AIS. > >Once we get over the initial shock of our condition, most >of us are much more concerned over secrets, isolation, >osteoporosis, and vaginal insufficiency. Although many of >us suffer greatly from our infertility, we seem to have no >more problems dealing with it than other infertile >women. In fact, it might be easier than waiting month-to-month >hoping to become pregnant. We have all found great comfort in >meeting other women who have such similar experiences and have >found the support group to be a very healing experience. > >The international support group is in contact with hundreds >of affected women, and many more physicians in at least 10 countries. >The group maintains web pages at: > >http://www.medhelp.org/www/ais/index.htm > >Interested physicians, AIS patients, parents of AIS children >and adults can reach the support group at: > >United States: >4203 Genesee Ave. #103-436 >San Diego, CA 92117-4950 >Email: kidddo@aol.com > >Canada: >P.O. Box 425, Postal Station C >1117 Queen Street West, Toronto, M6J 3P5 > >UK: >PO box 269 Banbury, Oxon, >OX16 6YT UK > >Australia: >PO Box 3371 >Logan Hyperdrome >Loganholme, Queensland 4129. >Email: pelican@gil.com.au > >If you are a physician with an AIS patient who is a minor, please >explain to the parents that in the long run patients do much better with >full disclosure (with age appropriate details) and psychological >counseling. We have 14-year-old members of the support group who >seem to be dealing with this knowledge in very capable ways. As one >14-year-old who attended her first meeting last year said as she >introduced herself to the group, "Hi, I am Jill (name changed), >I have AIS and I have been waiting all my life to meet you." > >I would be happy to accept individual email from interested >doctors. Please just make sure that the subject line starts with >the word AIS. Or if you would allow me, I would respond to your >site, if anyone posts questions there. > >Donna Leary >kidddo@aol.com >
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