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(Please note new web address - www.aissg.org)
The Androgen Insensitivity Syndrome Support Group (AISSG) is a UK-based charity which started in 1988 (formalised in 1993).
We provide information and support to young people, adults and families affected by XY-female conditions such as complete and partial Androgen Insensitivity Syndrome or AIS (old name Testicular Feminization Syndrome or Testicular Feminisation Syndrome). We also support those affected by Swyer's Syndrome (XY Gonadal Dysgenesis), 5-alpha Reductase Deficiency, Leydig Cell Hypoplasia, Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome, Mullerian Dysgenesis, Mullerian Duct Aplasia, Vaginal Atresia, and other related conditions.
The group has played a dual role in providing support and comfort to affected adults/families all over the world, as well as fighting for and contributing to a better understanding of the various conditions, and of how they should be ‘treated’ by the medical community.
This site provides access not just to the UK group but to a consortium of worldwide support groups that have grown from the UK group (see How to Contact Us for contact details of the UK and other national groups).
The AIS Support Group has the following aims:
The UK group started developing literature in 1993. This comprised a factsheet/brochure (in several languages), and from 1995 a journal/newsletter called ALIAS - Looking At AIS (see Literature page, from where a sample newsletter can be viewed/printed at no charge).
This website (started in 1996/7) contains lots of original materials, including articles (academic and press), book references and personal stories. The web pages are updated from time to time, but to receive the latest news on medical developments, discuss experiences with other members, and follow the publication of new press articles, books, documentaries etc. please become a member. Members of the UK group (who don't need to be UK-based, we have members in many other countries) can join our online news/discussion group.
Some of the more established groups (e.g. UK, USA, Canada, Germany, Holland and Spain) hold regular group meetings (see Group Meetings). Only members will receive invitations to group meetings and are able to help shape the meeting agendas.
An AISSG UK contact, with whom we have been in touch since late 2000, wrote (29 Sept 2006):
"I must say that your site was one of the most helpful I came across in terms of reassuring me that what I was discovering [about myself] really did happen to people, and that I was not going mad. Thanks for all you do and have done - you are one of the lights in this sometimes dark world. You have made a lot of difference to a lot of people's lives, and that is very important. I mean this - there would be people finding life much harder right now if you had not started AISSG and worked so hard for your community".
You can click on any of the links in the contents list (top left) to navigate the site but here is a suggested action plan:
2. Start exploring the rest of the site:
a) For an introduction to the site, go to About this Site
b) For medical details about AIS, start with What is AIS? and move on to other pages
c) Don't forget to check out the Literature and Personal Stories pages
Please note the copyright statement at foot of our pages. If you have a website, we do not mind you using hotlinks directly from there to any of our web pages (we can tell you how to do this) but please do not lift text from our site and reproduce it. If you want to deep-link to a specific place within one of our pages, please let the UK group know and we can add a bookmark for you to link to.
"Far from being natural or inherent, concepts of
the psychologically or physiologically normal
or abnormal have been crafted since the mid-1800s, when the British scientist
Francis Galton put forth his eugenic principles and the term normal, which had previously
meant “perpendicular”, began to be applied widely to the human body and psyche."
From ‘Fixing Sex: Intersex, Medical Authority and Lived Experience’
by Katrina Karkazis (2008, Duke University Press)