ANDROGEN INSENSITIVITY SYNDROME (AIS) SUPPORT GROUP

AIS has the following synonyms: Androgen Resistance Syndrome, Testicular Feminization Syndrome, Feminizing Testes Syndrome, Male Psuedo-hermaphroditism, Goldberg-Maxwell Syndrome (CAIS), Morriss Syndrome (CAIS), Lubs Syndrome (PAIS), Reifenstein Syndrome (PAIS), Gilbert-Dreyfus syndrome (PAIS), Rosewater Syndrome (PAIS). Other XY conditions: 5 alpha-reductase deficiency, 17 keto-steroid reductase deficiency, XY gonadal dysgenesis (Swyer Syndrome), Denys-Drash Syndrome, Smith-Lemli-Opitz Syndrome. XX conditions: Mayer Rokitansky Kuster Hauser (MRKH) Syndrome, Mullerian dysgenesis.

Androgen Insensitivity Syndrome (AIS) causes an interruption of the foetal development of the reproductive system resulting in abnormal development of reproductive organs and genitalia. There are two forms: complete (CAIS) and partial (PAIS).

AIS Support Group aims

• To reduce the secrecy, stigma and taboo surrounding AIS and other intersex states, by encouraging doctors, parents and society to be more open.
• To encourage the provision of psychological support within the medical system, for young people with AIS and their parents.
• To put parents and people with AIS in touch with others and to encourage them to seek support and information.
• To increase the availability of information on AIS both verbal (from the health professionals) and written (from the support group and other sources).
• To encourage improvements in treatment for vaginal hypoplasia and research into why the degree of vaginal development can vary in AIS.

The support group is in contact with around 130 families in Europe (mostly UK). A newsletter, ALIAS, is published three times a year and there are twice-yearly meetings.

The support group can provide publications including back numbers of the newsletter, AIS factsheet/brochure, and a Parent/Patient Book on CAIS. To receive a sample newsletter and parent/patient subscription details please write sending a large SAE and £3.00 payable to AISSG. Please note that the telephone number is for parent support only.

Androgen Insensitivity Syndrome (AIS) Support Group
P O Box 269
Banbury
Oxon
OX15 6YT

01295 670140 (parent support only)
01295 670140
orchids@Talk21.com
http://www.medhelp.org/www/ais

Associated Medical Information