TURNER-LINK
THE TURNER SUPPORT GROUP (TSG) NEWSLETTER

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Vol 2 Issue: 1                                      May 2001
MITA Permit No.: 215/12/2000


New TSG Events

Picnic at the Botanic Gardens

Fancy a relaxing morning with family and friends amidst lush greenery and serenity? Then you will not have to wait long, because TSG is organising a picnic at the Singapore Botanic Gardens on the morning of 23 June 2001 (Saturday) for all TSG members and their families! This picnic is free and we will also provide food and drinks!  The picnic is a good chance for you to meet up with your old friends and also to make new ones. There will be exciting activities and games for all to play and have fun. We strongly encourage you and your family not to miss this fun picnic, and look forward to seeing you there. 

You may meet us on 23 June at 8 a.m. at the lobby of the Main Building, National University Hospital. Alternatively, you can also meet us at the Botanic Gardens at 8.50 a.m. Please indicate your preferred meeting point on the attached reply slip, and also the number of family members joining us so that we can cater accordingly. We have attached the reply slip on page 6.  Please sign the consent form and send it to us with the reply slip.  Please mail in your reply before 13 June 2001 using the self-addressed envelope, or fax to us at 779 7486. 

New TSG Website

We are pleased to announce the completion of the TSG website. Finally, we have a website that we can call our own! Designed and constructed by Candice, our website carries information about TSG, our activities, the online version of Turner-Link, useful links to other TS websites, and a forum for discussion. TSG members can post messages to one another at the forum which will appear on a message board. We hope that TSG members will make use this new exciting avenue to update themselves about our new activities and also to communicate and keep in contact with one another!

So come on and visit us at: http://www.med.nus.edu.sg/paed/tsgweb/aboutus.html


id you miss our last TSG event? Here’s an account of what happened during

A Trip to the Bukit Timah Nature Reserve

By Gloria Chan

 We must have prayed hard enough. Despite the rainy December season, the morning of 9 Dec 2000 dawned bright and sunny - the perfect day for a leisure hike up Bukit Timah Hill. For weeks, the TSG organising committee agonised over the possibility of wet weather on the day of the nature hike and made contingency plans for it (you wouldn't want to know what they were!).  Luckily for everyone, there was no need to put those plans in use as!

The group, comprising TSG members and their families and the TSG organising committee, met at 8 a.m. at the National University Hospital. From there, we boarded a chartered bus and headed for Bukit Timah. Dr Shawn Lum, from the Singapore Nature Society, introduced us to the flora and fauna as we huffed and puffed our way up the hill. Bukit Timah Hill may not be Mount Everest but the invigorating hike did leave a few of us panting and gasping for breath! We definitely felt relief and a sense of accomplishment when we finally made it to the top!

Lunch was at the McDonald's outlet in King Albert Park - a time to catch our breath, have a bite, and catch up with each other. For those who missed the hike, we do hope that you can make it to our next TSG get-together. For our new members - we look forward to meeting up and getting to know you better at our next gathering so don’t forget to join us then!

Replacing Female Hormones in Turner Syndrome

By Dr Annapoorna
Department of Obstetrics & Gynaecology
National University Hospital

THE MANY FACES OF TURNER SYNDROME

Nora is a healthy newborn girl. After birth, her parents and doctors noticed that her hands and feet were unusually puffy. Tina is 7 years old and during a flu attack, her paediatrician noticed that she was shorter than most girls of her age. Diana, 14 years old, is concerned her chest is flat and that she is shorter than her younger sister. Joanna is 17 years old and has never had menstruation.

These girls do not appear to have much in common but they all have been diagnosed as having a condition called Turner Syndrome (TS) which occurs one in every 2,500 females. Fortunately, most girls suffering from TS can still lead healthy, productive and happy lives.

WHAT IS TURNER SYNDROME?

A syndrome is a set of features or symptoms often occurring together and believed to stem from the same cause. In 1938, Dr Henry Turner reported about 7 girls with features of short stature, underdeveloped sexual organs, webbing of the neck, low hairline in the neck and turned out arms at the elbow (cubitus valgus). 21 years later, Dr C.E. Ford discovered that the cause of Turner Syndrome was a chromosomal abnormality involving the sex chromosome - 45XO (normal females have 46XX). This means that one of the female organs where the eggs are stored (ovaries) is underdeveloped.

SEXUAL DEVELOPMENT

Turner syndrome is characterised by a number of variable changes in external appearance and in internal organs. There are as many differences between 2 girls with Turner syndrome as there are between any two normal people.

The lack of sexual maturation (breast development, feminine body contours and menstruation) in Turner syndrome is due to the failure of ovarian function. In a normal female, the function of the ovary is to produce the female sex hormones (oestrogen and progesterone), to store, and release the eggs once menstruation begins.  Oestrogen is responsible for a teenager maturing into an adult woman.  It causes an increase in height during puberty, with development of breasts and the womb. As there is a deficiency in oestrogen in Turner females, they are shorter and their breasts do not develop. Their wombs will also be smaller. Essentially, they have all the reproductive organs in their body just like any other normal female, except that they do not develop physically.

Approximately 5% - 10% of females with Turner syndrome may exhibit some breast development on their own.  However, only 1% will menstruate and less than 1% will be able to conceive without medical help.

HORMONE REPLACEMENT THERAPY (HRT)

Fortunately, help is available for Turner females. With Hormone Replacement Therapy (HRT) to make up for the lack of ovarian hormones, these Turner females can develop their secondary sex organs and look like normal girls and women. HRT usually begins when they are around 12 years old.

Initially, a low dose of oestrogen is given, and this dosage is increased every 6 months. This will initiate breast development.  When another hormone progesterone is given, the regular monthly menstrual cycle will commence.  With HRT, the uterus will develop and attain the full adult size. Sexual function in a Turner female receiving HRT will be the same as a normal woman. HRT will also help to preserve the bones and prevent osteoporosis.

Although the side effects of long-term hormone treatment are considered to be low in a Turner girl, she should have yearly checkups and promptly report any unusual symptoms to the doctor.

Fertility

The options for having children are the same as for other women with fertility problems. Adoption of a child is a common solution. Newer techniques such as egg donation from the siblings or others, followed by in vitro fertilization (test tube baby) may be used.  The embryo is transferred into the womb of the Turner woman.  Combined with hormonal therapy, the Turner woman can carry a child through pregnancy and give birth.  A woman who is interested in exploring these options should ask her doctor to refer her to the appropriate specialist.

DISCLAIMER: The information and recommendation in these articles are for reference and guidance; it is not intended as a substitute for a doctor's care.

The Letter Box

“The Letter Box” aims to answer any queries by TSG members regarding all health-related matters which may not necessarily be confined to Turner Syndrome. In the previous issue, we compiled some frequently asked questions (FAQs).  If you wish to obtain back copies of Turner-Link, you can contact any TSG committee member.

FAQs about Turner Syndrome (TS)

What other medical conditions may occur in girls with TS?

Kidney abnormalities are present in 25 to 30% of girls with TS.  Thus doctors screen for kidney abnormalities routinely.  Heart defects may occur in up to 33% of girls with TS.  Hearing problems may occur because girls with TS are more prone to fluid accumulation in the middle ear.  They are also at risk of developing thyroid problems.  Therefore the doctors routinely examine their patients for these problems.   

What is the treatment available for a person with TS?

Recent studies have shown that the growth deficit in children with Turner Syndrome can be restored to a significant extent by injections of human growth hormone before growth is completed.  Children with Turner Syndrome usually do not lack growth hormone, but they do increase their rate of growth with the addition of human growth-hormone therapy.  Sex hormone replacement with oral medications at the appropriate age will promote pubertal development.  Although infertility cannot be altered, pregnancy may be possible through in vitro fertilization.   Replacement with thyroid hormone is important for growth and health in patients who need it.    

DISCLAIMER: The information and recommendation in these articles are for reference and guidance; it is not intended as a substitute for a doctor's care.

If you have any questions for ‘The Letter Box’, please post your queries to:

The Letter Box
Turner Support Group
(Attention: Dr Lee Yung Seng)
Department of Paediatrics
Children’s Medical Centre
National University Hospital
5 Lower Kent Ridge Road
Singapore 119074
Or e-mail to
Webmaster


Please contact us if you need any other information.    Tel: 772 4112
                                                                  E-mail: paev15@nus.edu.sg

Published by: The Turner Support Group
                       Department of Paediatrics
                       Children's Medical Centre
                       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.

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