Gok’s charity of the month – November: Turner Syndrome Support Society

Hello my lovelies, welcome to November which is without doubt my favourite time of the year as I have every excuse to whack out a winter knit and mittens!

But much more importantly than just wrapping up is giving a little winter sunshine to peoples lives. Now we can do that in many different ways, but my favourite way, and something that everyone in the world can get involved in some how, is charity.

I want to introduce you to my charity of the month for November; the Turner Syndrome Support Society. They give vital help and support to those girls suffering with Turner Syndrome. Now you may never have heard of this but it affects almost one in every two-thousand females… that’s a lot of people! And we need to make sure they get as much help as possible.

Please read on to find out more about all the valuable work the TSSS do and how you can help.

All my love as ever.

Auntie Gok x

Turner syndrome What is it?

Turner syndrome [TS] is a relatively common chromosome abnormality affecting only females. It is caused by the complete or partial deletion of the X chromosome in some or all of the cells of the body.  The incidence of TS is approximately 1 in 2000 live female births.  There are a number of physical features and characteristics associated with TS but it is rare that they will all appear in one child, but short stature and infertility are nearly always present.  Providing diagnosis is made early enough there is the possibility of growth hormone treatment for short stature. The majority of girls and women with TS are healthy, happy and lead normal lives.

 
This is Kylie & Shona at the TSSS conference

What causes it?

The cause of the missing or abnormal X chromosome is not known. No risk factors such as maternal age, diet during pregnancy etc have been identified with an increase in risk of having a baby with TS. Parents with a diagnosis of TS during pregnancy or after birth are advised to have genetic counselling so that they can receive clear, comprehensive and accurate information about TS.

TS is sometimes suspected during antenatal tests such as ultrasound or by amniocentesis and chorionic villus sampling. However, it is more usual for a diagnosis to be made later, after a baby is born, because the baby girl has certain features i.e. short wide neck, puffy hands or feet, widely spaced nipples and occasionally a heart problem.

Further more detailed information can be obtained by visiting the Turner Syndrome Support Society website www.tss.org.uk

Support

The Turner Syndrome Support Society is a national charity caring for the needs of those with Turner Syndrome throughout the United Kingdom. The Society offers support, advice and information to both girls and adult women with Turner Syndrome, their families and friends. Communication with other support groups, both domestic and international is important and offers the opportunity for an exchange of ideas to help develop awareness and greater understanding of Turner Syndrome throughout the UK and worldwide.

Members of the Society receive regular copies of ASPECTS, the TSSS newsletter. The title of the newsletter has been chosen to reflect its intention to cover all aspects of Turner Syndrome from day to day living, medical issues, research, education, social issues and more, within the newsletter.

Membership offers access to a membership network for social contact with others who share the same interest and concerns. Each year the Society holds an annual conference and a number of open days around the country.  Experience has shown that one of the most important needs of those with TS and their families is to have contact with others who share their experiences.  Parents of young girls, adults and teenagers with TS benefit enormously from meeting each other at these events.  Lasting friendships are formed, especially amongst the teenagers with TS.

Some of our girls celebrating the talent that many of our girls seem to have for music and drama.

TS is a ‘cradle to grave’ condition and as such require medical treatment throughout life.  The Society actively promotes the setting up of ‘one stop’ adult clinics for those with TS and the smooth transition from paediatric to adult clinic for teenagers with TS.  Promoting greater awareness of all aspects of TS amongst the general population is one of the aims of the Society.

A number of information leaflets and guides are available from the TSSS For more information and membership details please contact: – Turner Syndrome Support Society [UK], 12 Simpson Court, 11 South Ave, Clydebank Business Park, Clydebank G81 2NR

Tel: + 44 (0) 141 952 8006

E-mail Turner.Syndrome@tss.org.uk

www.tss.org.uk or  www.facebook.com/TSSSUK