Support Group

Support Group

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The Androgen Insensitivity Syndrome Support Group (AISSG) is a UK-based group 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 rolex daytona 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).
Aims of the Group

The AIS Support Group has the following aims:

To reduce the secrecy, stigma and taboo that has existed around AIS and other intersex conditions, by encouraging doctors, parents and society to be more open.
To encourage the provision of psychological support within the medical system, for fake watches 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 extent of vaginal development can vary in AIS.
To encourage retrospective studies on genital surgery, so as to evaluate whether it is an effective treatment for the patient.

Literature, Membership and Group Meetings

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 swiss replica watches 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.
Testimonial

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”.
Where to Go from Here?

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:

1. Download some documents to read later:
a ) AIS Factsheet (2 pages – 23 Kb)
b ) Sample Newsletter (16 pages – 1149 Kb)
c ) Recommended Books Document (6 pages – 302 KB)

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

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