WOMENS-HEALTH Messages for March, 1998: Androgen Insensitivity Syndrome Support Group

Androgen Insensitivity Syndrome Support Group

From: Donna (anonymous@obgyn.net)
Sun, 1 Mar 1998 15:00:02 -0600 (CST)

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Androgen Insensitivity Syndrome (formerly called Testicular Feminization) is one of many interesex conditions. An intersex condition is one in which the person sex chromosomes (normally XX or XY) do not match the gender that their body presents. As many as 1 in 2,000 children have an intersex condition including Turner's, Klinefelter's, Congenital Adrenal Hyperplasia and other more rare forms such as Swyer's and Mayer-Rokitansky. In the past, there has been an effort to keep this information from the patient for fear of the psychological harm it "might" do. Generally, these patients suffer more from the isolation imposed on them by the secrecy and lies than they have from the truth.

In AIS, patients have: · male (XY chromosomes), · a body that is normally completely female in appearance (in the more rare Partial form of AIS there can be genital ambiguity), · little or no pubic and underarm hair, · no uterus nor ovaries, but rather internal testes that have an sharply increase risk of cancer, · a shortened vagina, · normal breast development as adolescents · infertility

The estimate of the occurrence of AIS is about 1:40,600 live births. That should mean approximately 6,000 AIS patients in the US. When AIS is present in a family, the X-linked recessive inheritance pattern make it easy to pass along and AIS women can often find other affected women in their families.

A diagnosis may be made in infancy if the child is born with genital ambiguity, an otherwise normal-appearing girl presents with inguinal hernia that contain the testes. However it is most common that they are diagnosed in late adolescence when they don't begin their period. Surgery is recommended to prevent cancer and of course, fertility was never possible.

There is an international support group that 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

Patients and parents of affected AIS children and adults can reach the support group by regular mail 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

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.

Thanks for this wonderful forum. I would be more than happy to accept individual email from interested doctors.

--
Donna

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