AIS (Androgen Insensitivity Syndrome) Support Group

Androgen Insensitivity Syndrome
Support Group (AISSG)

(Please note new web address - www.aissg.org)

[this page last updated 02 Mar 2010]

UK Group
Registered UK Charity No. 1073297

Affiliated to: Contact a Family, Rare Disorders Alliance-UK,
Genetic Interest Group (GIG), Long Term Medical Conditions Alliance and
International Alliance of Patients' Organizations (IAPO)
US Group
Registered IRS [501(c)3 Organization] No. 37-1407648
Canadian Group
Charitable Business No. 88977 6142 RR0001
Spanish Group
Fiscal Identification (C.I.F.) G63220958

The Androgen Insensitivity Syndrome Support Group (AISSG) is a consortium of worldwide support groups that owe their origins to the UK-based group which was 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.

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 would like 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.

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 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 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 A^LI^AS - Looking At AIS (see Literature page, from where a sample newsletter can be viewed/printed at no charge). Some of the more established groups (e.g. UK, USA, Canada, Germany, Holland and Spain) hold regular group meetings (see Group Meetings).

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".

Donations

Donations to AISSG UK can be made via the Charity Choice 'AISSG' page using major credit cards (not American Express) or a debit card. Your credit card or bank statement will show "Charity Choice" and the amount paid.

Charity Choice (also known as The Encyclopaedia of Charities) runs a database of over 10,000 UK registered charities and has been in operation for over 17 years, providing comprehensive information about charities to the public and to professional Wills and Trusts advisors. Its donation service for charities is run in association with the Co-operative Bank Plc, a British clearing bank founded in 1872 and renowned for its ethical stance and for being a major player in the UK charities sector. Neither Charity Choice nor the Co-operative Bank takes any charge or commission, either from the person donating or from the charity.

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
d) For details of the various national groups, see How to Contact Us

"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)