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Group Meetings

[last updated 12 April 2006]

Introduction

Twice yearly UK group meetings (late March and late September) started in 1995. Some people travel from continental Europe and from the USA in order to attend.

The following UK group meetings have taken place to date:
No. Place Date Attendees
1 Mansfield, Notts 25 Mar 1995 16
2 Mansfield, Notts 2 Sept 1995 14
3 Banbury, Oxon 3 Mar 1996 39
4 Huntingdon, Cambs 21Sept 1996 60
5 Richmond, Surrey 22 Mar 1997 78
6 Oldham, Lancs 27 Sept 1997 49
7 Oxford 21 Mar 1998 62
8 Leeds 26 Sept 1998 62
9 Oxford 27 Mar 1999 53
10 Derby 9 Oct 1999 38
11 Oxford 25 Mar 2000 51
12 Oxford 9 Sept 2000 44
13 Oxford 24 Mar 2001 63
14 Leeds 24 Sept 2001 36
15 Oxford 23 Mar 2002 62
16 Oxford 21 Sept 2002 45
17 Oxford 12 April 2003 39
18 Lille, N. France 7-9 Nov 2003 ??
19 Oxford 20 Mar 2003 60
20 Oxford 19 Mar 2005 48
21 Oxford 8 April 2006 38

The first North American meeting was held in September 1996 and annual meetings now take place in the US every Summer/Fall. The Canadian group started holding meetings soon after. Some of the other overseas groups (e.g. Holland, Germany, Spain) also hold meetings. The Spanish group (GrApSIA - Grupo de Apoyo del Síndrome de Insensibilidad a los Andrógenos), in particular, does a very professional job considering they are a small group, with a proper meeting brochure (see Spain 2002 and Spain 2003).

Note: We do not advertise UK group meetings in advance on the web site (all current members receive personal invitations). Basic details of N. American meetings (dates, city, who to contact for details etc.) are often posted on our Announcements page in advance.

Who Can Attend

The meetings are for families and individuals affected by AIS and similar conditions. Guest medical/psychology specialists also attend part of each meeting to present information and answer questions, and there is also time set aside for private discussion between individuals/families. Other clinicians can attend as observers by arrangement. Parent/'patient' attendees must be subscribers to one of the support groups and can attend meetings in other countries.

Everyone feels extremely nervous and anxious at their first meeting, but will find that they quickly make friends. People often remember their first meeting as an event that had a profound effect on their lives; and the remarkable thing is the amazing sense of freedom in suddenly realising that there is no need to be secretive any more because everyone in the room is affected in some way or other by AIS or a similar condition!

Meetings Format

UK and US meetings take place over a weekend. The UK meetings have the following format. People coming a long distance usually arrive on the Friday afternoon/evening and meet up with some of the others staying at our recommended hotel. On the Saturday morning we meet at the venue and our panel of invited guest clinicians talk briefly about their clinical/research work, after which there is a Q & A session. The clinicians leave at/after lunchtime and the afternoon is devoted to a general discussion amongst the affected adults/youngsters and parents. In the evening, people assemble for drinks at our recommended hotel, after which we eat together (sometimes in the hotel, sometimes in a local restaurant). There may be some spontaneous late-night hilarity in one of the hotel rooms (amongst the women at least, we don't know what the parents get up to). Over the course of the weekend there might be some tears, but there will also be quite a lot of laughter. This is a natural outlet for the emotional tension that builds up during the meeting.

On the Sunday we reassemble at the meeting venue and break two groups, 1) affected women, and 2) parents, for further informal discussion. There is space for other groups as required. At some meetings we have a psychosexual counsellor/psychologist to guide the adult women's discussion. The weekend usually ends late afternoon as people depart to catch trains, planes etc.

The Benefits

To put patients in touch with other AIS girls/women is probably the single most therapeutic remedy that doctors could prescribe; and yet this is the one step that they have historically been most reluctant to take. We cannot stress this too strongly.

A CAIS 39 year-old in the US wrote:

Meeting other women with AIS, finding them to be normal makes it easier to view yourself this way, I think this is what caused me to make great strides in coming to terms with AIS. When I started going to meetings in the UK, I would literally look around the room and think to myself “This is a group of great women about whom I don’t feel the least discomfort that they have XY chromosomes or once had testes.” By being able to find this so utterly acceptable in them, I came to be much more accepting of myself. It’s like the other group members are a mirror of ourselves and when we like what we see in the mirror it becomes easier to appreciate ourselves and to understand how others could find AIS acceptable in us.

A CAIS 30 year-old wrote:

Meeting another AIS woman [a CAIS 28 year-old] for the first time was the first time in my life I have ever felt a true ‘kinship’ with another woman. I might warn you not to mention this idea to any of your regular friends, as my best friend didn’t quite understand and it really hurt her feelings. But then, I don’t think she could ever truly understand, which is precisely my point. To meet a person and immediately understand exactly what they have been going through their whole life is such a unique experience.

A PAIS 44 year-old wrote:

Prior to meeting AIS women, I had this impression that there were aspects of my physical looks, or a vibe I might put out that would make people think I was not a woman. Baggage. I'm overly sensitive to it, and it remains an issue.... And I remember regularly probing my face in the mirror from age 14 to 20-something, to see what was different. Was there something in my face that gave me away, that was subtle to me, but more obvious to those who looked at me – especially women, since they'd be the first to know, I thought. Today I don't think so. It has been a big change since the day I first asked ____ [CAIS 39 year-old], at the NYC group meeting in Sept 96, “Can you tell by looking at me?” I had wanted to ask someone that question for three decades. I've been in solitary confinement for all that time. Yep, I got parolled last year. My only visitor was my mother. Kidding aside, in some ways I view my current life as ‘restarting’ [last year] in Sept 96. I was 14 when I was given ‘the story’ by the doctor. Maybe there is a part of me that is only 15 years old inside today.

A CAIS 54-year-old wrote:

I remember _____ [CAIS 28 year-old] once said to me that she feels like she’s spent her entire life treading water in an angry sea with her feet tangled up in kelp. I had used that exact same analogy in trying to explain to my therapist how I felt about my life, and how I often wished the undertow would just go ahead and pull me to the depths. What a comfort it would have been to me all those years if I could have just once looked along the horizon and seen one of you struggling along with me. It might have given me the strength to try and pull myself free of that which entangles me and start swimming towards the shore.

A support group member, reporting on an AIS clinic 'open day' at the Middlesex Hospital, London (17th March 2000), wrote:

A nurse from Prof. ______’s paediatric endocrinology clinic asked how could she get round the problem of parents who want nothing to do with the support group because they "....want their children to mix with ‘normal’ people rather than be labelled as ‘oddities’ by mixing with support group members".

This is a difficult problem that we encounter quite a lot. Parents need to get away from their fixation on a ‘mirage of normality’. Although their children have a good chance of leading normal lives, their very real deficiencies have to be acknowledged rather than denied. If this does not happen, their children are highly likely to experience psychological problems because they will know that all is not right with their bodies. And for parents and doctors to keep telling them they are normal will only make them more suspcious that there is something being hidden from them.

Children will at some stage need to grow up into sexually functioning adults, whether their parents like this idea or not, and the groundwork for this is set in their childhood/teens. This development will not take place properly if the child is sentenced to solitary confinement, forever wondering if they are the only person on the planet with some strange condition that none of the adults around them will talk about.

The best way for parents and youngsters to get over their hang-ups and anxieties is to mix with others with a similar experience and discuss things.

See also Telling the Illness Story for an article on the healing power of telling one's story.


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