Gok’s charity of the month – November: Turner Syndrome Support Society
Posted on November 1st, 2012 in Charities |
21 comments »
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
Fantastic that the TSSS is Goks’ charity of the month. As a TS lady diagnosed at birth, the team provide amazing support as well as up to date information from experts.
This is fantastic, thankyou for choosing the TSSS! It is an amazing charity that has helped me loads
xxx
Fantastic that the TSSS is Gok’s charity of the month. They have provided such brilliant support for so many families over the years. Follow the links and find out more about the condition … C x
Thankyou for choosing the TSSS! The help they’ve given me has been invaluable and I now have friends for life
THANKYOU GOK! thakyou for choosing this amazing charity! I am a 15 yr od with Turner’s and knowing that it’s getting more widely recognised because of people like you is great! thankyou so much xxxxx
Thank you so much Gok for choosing the TSSS. I’m a mum of a 5 week old little girl who has TS. She was diagnosed at 13 weeks gestation and the TSSS were a great support to me though my pregnancy and since Merrin was born. It’s so reassuring to know Merrin will have their help as she grows. xx
Thank you so much for choosing the TSSS as your charity of the month. It will really help us raise awareness. Your support is very much appreciated xx
This is a fantastic charity that have helped us as a family since our youngest daughter was diagnosed with TS at birth. Its great more awareness of the condition is getting out there!!
Thank you so much for supporting the TSSS. Our 9 year old was diagnosed pre-natally and the support and knowledge of the TSSS has been amazing. It’s really important to raise awareness as well as funds for this fantastic charity.
Thank you soo much for chossing the tsss. as a turner syndrome girl its always good to see celebritys raising awaness
gok my 4 yr old has ts I raise awareness on fb n twitter
The smile on my face right now, so amazing my cousin has turners syndrome!
So glad uve chsen TSSS as your charity of month! :* xxx
I really do love you Gok. As a woman with Turner Syndrome myself from Northern Ireland, Belfast. The fact that you have choosen Turner Syndrome as your charity of the month
completely means so much to me in every way! I adore you!
Love Toni xxxxx
Thank you for choosing the tsss! They are a fantastic charity and as a 24 year old with ts the they have given me has been invaluable!
I am mother of a 19 daughter with TS. I would like to thank you so much for choosing to support this amazing charity .
so glad Gok has made TSSS his charity of the month to raise awareness, thats just what we need to help gain support
Thankyou so much for choosing tsss.as your charity of the month it is a fantastic charity, as parents of a young lady with turner syndrome.
It has been the best thing we ever done joining,couldent be without them now.
Thank you very much for this your support will be truly amazing foemr such a fantastic cause that had helped me so much over the years
Thanks so much Gok
the TSSS is so amazing and they help girls with TS (like myself) so much and your support means so much to everyone at the society ,thank you for helping us raise awarness 
xxx
As a lady with TS, thank you for supporting this charity. I know you are an advocate of helping people with confidence issues and it is just what many of us TS ladies need. Thank you again
It’s my birthday today, I’m 31 married and a mother.
I also have mosaic Turner Syndrome.
Thank you for making my birthday month by supporting a charity for a condition I didn’t even know I had til I was 27!
Love back X0/XX