Logo of the Turner Syndrome Support Group NZ Incorporated

Turner Syndrome Support Group
NZ Incorporated

Providing support to people affected by Turner Syndrome and their families throughout New Zealand

Turner Syndrome Conference – Perth

This was my sixth Australian conference so it was exciting to be in a different city hoping to catch up with old friends. 

The casual friday dinner was great as we all got a chance to catch up from the last time we had met and welcome some new faces.

Saturday was pretty full on with the following speakers:

Medical management of TS in woman:
Bronwyn Stuckey gave us an overview of things to keep an eye on as we get older and have settled into a HRT regime. The main things being the hormone treatment, bone strength, autoimune problems, Metabolism, hearing, heart and fertility. She outlined the reasons for HRT, the different types and finished with a checklist of blood tests which included blood sugars, cholestrol, kidney and liver function, thyroid antibodies, bone density and echocardiogram.

Paediatric endorine overview and management in TS girls:
Tim Jones Gave an outline on the concerns when diagnosing and treating girls with turners syndrome then outlined the timing of HRT and the transition to adult services.

Fertility issues in woman with TS:
Roger Hart talked us through the fertility issues and the IVF process.

Self-esteem:
Jo Elliot Talked about the issues surrounding self-esteem or self-confidence and gave us some pointers on overcoming these issues.

Heart health:
Andrew Bullock Spoke about the various cardiac abnormalities and what can be done to remedy them.

Adoption and fostering:
Cindy Randell and co-speaker Outlined what their department did and the various options for adopting and fostering Children in Western Australia also some the issues that can occur with taking care of children who are in care.

Ear nose and throat:
Steve Rodriques gave a presentation on the various ear diseases and then the options of hearing aids from the behind aids to cochlear implants.

Then it was time for the various discussion groups for woman, dads and partners, mothers / female family members, teens and girls, adoption and fostering.

Sunday started with the AGM of the Australian association then a talk on Visual perception.
Bev Prestegar explained visual perception it's importance and some strategies to help those girls who have problems. She stressed the importance of getting early help and what an Occupational therapist does.

There was a guest panel made up various members of the Australian association who talked about their journey with Turners syndrome.

After presentation of certificates to the organisers and helpers the conference closed; but finished with a cruise on the swan river for those who had booked.

For me the main thing was meeting up with the ladies I had met at previous conferences.

The speakers all presented their information in clear and easy to understand way.

The main message seemed to be that this condition means a life time of monitoring your health, ensure that you get early intervention when things go wrong and maintain a healthy/balanced lifestyle.

The next conference will be in Sydney in 2012 so start saving.

I understand that some of the speakers presentations will be reprinted in future Australian associations newsletters.

Diane