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THE TURNER SUPPORT GROUP (TSG) NEWSLETTER

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TSG Launches Newsletter

We, the Newsletter Editorial Team, are proud to start our first newsletter in the hope of creating better awareness of Turner Syndrome (TS). The group members include TS individuals and their families, doctors (paediatricians, obstetricians and gynaecaologists), and a pharmaceutical company (Serono) who has kindly supported each meeting financially. The NUH doctors involved in the TSG include:

Assoc. Prof. Loke Kah Yin (Dept. of Paediatrics) - Chief Editor
Dr. Lee Yung Seng (Dept. of Paediatrics) - Editor
Dr. Annapoorna (Dept. of O&G) - Editorial Member

We hope to send out a newsletter twice a year.

Our first TSG meeting was held in 1997. In our first meeting, it was a heart-warming experience to be able to share the thoughts of a teenager with TS. This prompted our second meeting in December 1998, and our third in June 1999. The meeting in December was mainly an educational one. Feedback from the 11th Annual Conference of the Turner Syndrome Society (13th-15th Nov.) in San Francisco was shared with the TSG. Basic understanding of what TS is, right through to the latest update in TS management was discussed. A Mandarin translation of the talk was also available, as well as booklets on TS. The June meeting was successful thanks to several key volunteers, who made the ice-breaking games fun and make-up session interesting. During the meeting, we had active discussions in two groups (parents and adult TS; children & adolescents with TS + siblings). We would like to share some of the important issues raised:

What are the possible complications later in life and will there be preventive measures that should be taken?

Your doctor, after examining you clinically, should tell you whether you need further testing to check your heart. Coarctation (a narrowing) of the major blood vessel from the heart, and heart valve problems occur in 16%-23% of TS patients. You can be born with or without these problems, you do not 'catch it' later. If you do have a heart problem, you have to have a regular medical check-up, especially before pregnancy. TS girls have a high chance of developing thyroid problems and diabetes if they become severely overweight. Thyroid problems can be checked for by a blood test (once a year) and healthy eating is advised. Another issue is female hormone replacement therapy for the strengthening of bones. This will be started by your doctor once you have completed growing.

What is the difference between a Turner girl and one who is not; based on activities, relationships and character?

The full TS exists when there is only one X chromosome instead of two in the cells. Sometimes, only a percentage of cells have one X chromosome. This is called a mosaic TS. A girl with mosaic TS may look completely NORMAL due to the fact that not all the cells in her body are 'Turner cells'. Unfortunately, she is still at risk of all the associated problems discussed above. Unless a TS girl is limited physically by a heart condition, there are no restrictions to activity like any normal child. TS girls have NORMAL intelligence. Mathematics, organisation skills may be a problem, and they can be overcome (we have a TS accountant in our group, the organisation chairwoman of the TS group in USA has TS!). Low self-esteem is a problem in the majority of TS girls. Parents and friends need to be sensitive to the emotional needs of a TS girl, without being too over-protective. We will be addressing this more in the next TSG meeting in December 1999.

This article was written by: Dr. Sharon Lim
                                           Registrar
                                           Children's Medical Centre
                                           National University Hospital
                                           Singapore

Story-writing and Logo competition:

We are holding a story-writing competition entitled "My dreams for the millennium" and a logo competition. The dateline for both competitions was 6th December 1999. Winners will be announced and prizes will be distributed at our meeting on the 18th December 1999.

Prizes for the best story:    1st prize: S$150 Borders book voucher
                                          2nd prize: S$100 Borders book voucher
                                          3rd prize: S$80 Borders book voucher

Prize for the most creative logo: S$150 Borders book voucher

Please contact us if you need any other information.    Tel: 772 4112

Published by: Turner Support Group
                       National University Hospital
                       5 Lower Kent Ridge Road
                       Singapore 119074

Editorial Team: Chief Editor: Assoc. Prof. Loke Kah Yin (Dept. of Paediatrics, Children's Medical Centre, NUH) Editor: Dr. Lee Yung Seng (Dept. of Paediatrics, Children's Medical Centre, NUH) Editorial Member: Dr. Annapoorna (Dept. of Obstetrics & Gynaecology, NUH)

Supported by: Serono Singapore Pte. Ltd.