National AISSG Australia Meeting in Brisbane

The AIS Support Group Australia made a commitment last year to have two annual national meetings, with one of them being held out of Victoria. Brisbane was identified as having the greatest number of members, so we held a meeting/workshop there in May this year. The meeting was a huge success and signified the continuation of an important era in the life of the AIS Support Group Australia.

The participation was very good in terms of overall numbers, the different sub-groups represented (i.e. parents & affected people, various levels of androgen sensitivity, gender and age) and the ability of the group to openly discuss issues, concerns and experiences in a safe, confidential, friendly, supportive, sensitive and understanding environment. The diversity of attendees ensured that discussions of the widest possible number of issues took place. The support group hopes that such good attendance continues as this provides the best possible opportunity to ensure that members' needs are represented. Most participants expressed their approval of the inclusive nature of the support group and the ease with which people felt able to openly contribute in discussions.

PERSONAL EXPERIENCES/STORIES

Following my introduction and brief outline of the history of the support group and our achievements, the meeting focused on members sharing personal stories about the way their lives have been affected by AIS or similar conditions. It was emphasised that there was no pressure for people to participate, although people willingly took the opportunity to share their experiences with others who can relate to their issues. Stories included details of:

- inaccurate, misleading, or total lack of information regarding AIS,

- a pervasive lack of compliance with hormone therapies,

- difficulties with relationships (including sexual and intimacy issues),

- experiences with going to school and dealing with peers in childhood, adolescence and early childhood when you have AIS,

- feelings associated with not menstruating like other girls for females with AIS,

- feelings associated with having breasts and not having typical genitalia for boys with AIS,

- infertility,

- adoption,

- success of reconstructive surgeries,

- doctors refusing to put people in contact with others with AIS, even when asked by older adolescents and parents,

- difficulties in making choices for children with AIS - especially when the 'big picture' isn't explained and doctors place some urgency on making a decision regarding gonadectomies,

- the need for parents to learn of the support group as soon as a child is diagnosed as having AIS or a related intersex condition,

- the possible strain on the family and on the parent's relationship when dealing with a child with AIS or a similar condition,

- lack of knowledge or research on the timing of gonadectomies and the relationship it has with bone mineral density and body image,

- lack of knowledge or research on hormone therapies for people with AIS and similar conditions (both oestrogen and testosterone therapy)

- the poor manner in which some parents are treated when a newborn is diagnosed with AIS or similar condition,

- lack of knowledge by the medical profession in general on AIS and other intersex conditions,

- raising boys with PAIS,

- disclosing information about AIS to affected children and adolescents,

- parents telling friends and family that their child has AIS,

- parents telling family and friends that their young baby's sex was incorrectly determined at birth, and that they are in fact of the opposite sex,

- the expense of treatments like oestrogen, testosterone & Fosomax, and the inability to obtain DHT for males with AIS and

- thanks and praise for Garry Warne's book on CAIS and a need for a booklet on PAIS.

There are a lot of issues within these stories that are more complex, but the points listed are the more common ones. Many people later commented how relaxed and comfortable they felt discussing their stories and experiences in front of a group of people who could understand their personal experiences. A comment from a woman with CAIS on the follow-up questionnaire was "it has been an excellent opportunity to share anecdotes and feelings in such a friendly environment".

MEDICAL PRESENTATION/QUESTION & ANSWER SESSIONS

Two Directors of Paediatric Endocrinology attended the support group meeting and contributed enormously to the weekend. Dr Andrew Cotterill from the Mater Children's Hospital (Brisbane) gave an excellent presentation on AIS, and answered many questions about genetics, timing of gonadectomies, management of children with CAIS and PAIS (for both males and females), hormone therapies (oestrogen and testosterone), bone mineral density and research. Dr Cotterill also spoke of the difficult 'grey areas' in the clinical management of children with PAIS, and the importance of the role of the support group in the education of doctors and other medical professionals.

Dr Jennifer Batch from the Royal Children's Hospital (Brisbane) attended the meeting on the Sunday and provided the perfect opportunity for people to ask questions arising from the first day of the meeting. The discussion topics were similar to those discussed on the Saturday, but did focus more on hormone therapy, bone mineral density and surgical intervention.

The contributions of these doctors were much appreciated by all who attended, with several people commenting that it was the first time doctors provided answers to the more difficult questions.

ETHICS ISSUES

Andie Hider (the Secretary of the AIS Support Group Australia), is the official intersex community representative on the Royal Children's Hospital Melbourne bioethics study. She gave a brief outline of the intended purpose of both the ethical and genetic aspects of the study and then Tony and Andie invited discussion about ethical concerns with the following points being raised by members present:

- Bed-side manner of doctors

- Lack of support

- Can explain things better, with written material, videos, contact with the support group

- 'Trump Card' issue with surgical intervention being used to silence some legitimate concerns raised by parents about the intended treatment regime.

- Full facts prior to surgery

- The speed at which a decision is asked for and the fact that parents felt 'pushed' in a certain direction as opposed to having options presented

- Doctors being adamant that parents should not tell anyone

- Breaking the secrecy

- Hospital issues - who knows, what is recorded etc

- Level of sensitivity of the doctors in explaining things to adolescents.

- Speaking about people in the third person and overheard conversations between doctors/nurses about the person concerned.

- Accurate diagnosis

- Lack of consensus for treatment

- Difficulties with pharmacists requesting information as to why a young woman was taking oestrogen, scripts not being filled, comments about 'your mother will have to sign for this herself'

- Language in reports and medical records. For example - "F" (female in quotation marks)

- Concerns involving genetic research.

- Medical Students being present in the examination room (this issue was discussed at length by all present and agreed that the best approach is that medical students be outside of the consultation room when the regular clinician asks parents and young people for permission for medical students to be present during consultations and/or examinations and that they should be told that they have the right to say no. As a result of the discussion of this issue, the AIS Support Group Australia has adopted this suggestion as our official position about this type of request.)

COMMENTS & CONCLUSIONS

The feedback from all participants was very positive. Several have indicated that they will attend the next meeting in Melbourne, and it is important that as many other parents as possible be given the opportunity to attend meetings. To this end, several members from Queensland are going to try to raise money so that they can help parents who are unable to attend meetings due to financial constraints. It is encouraging to see members taking such initiatives that will allow the support group to continue to grow to support, represent and be inclusive of as many people as possible.

Several older members speculated about how their lives would have differed had they been able to access a support group when they were younger. The general consensus was that the role of the support group is a very important one in learning, understanding and coming to terms with AIS. This sentiment was reinforced by comments from the evaluation questionnaire like "the meeting was well presented, informative and helped in my self-discovery" (written by a woman with CAIS).

It was also agreed by all present that parents should have access to the support group as soon as possible, which reiterates the established policies of the AIS Support Group Australia.

The contributions of Drs Cotterill and Batch were very informative, honest and well received. The support group is genuinely interested in working with the medical profession to provide world's best practice in the treatment of children (and families) with AIS. This was clearly seen at this meeting. The meeting was a good opportunity for the AIS Support Group Australia to continue to work and liaise with and educate leaders within the medical community to improve their understanding and treatment of people with AIS and similar intersex conditions and their parents. The doctors themselves acknowledged the importance, strength and inclusiveness of our support group.

A Sex Therapist may have been of benefit to several members who raised issues relating to difficulties with sexual intimacy. The support group will invite a sex therapist to the next meeting for those interested in a 'get down and dirty' sexual issues session.

The AIS Support Group Australia is well positioned to continue to provide support and information to people with AIS and similar conditions, as well as liaising with the medical profession about our needs and treatment. Our membership is continuing to increase, primarily due to our website and newsletter 'dAISy', and it is hoped that more doctors will provide the contact details of the AIS Support Group Australia to the people in their care.

I would like to personally thank all of those who attended the meeting (including those who came from interstate and overseas), Phoebe for her work in bringing it all together and Drs Cotterill and Batch for their valuable contributions. I am very much looking forward to our November meeting.

Tony Briffa

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Last update: 9 November, 2013

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