Conference 2012

The 2012 Annual Conference is at the Park Hall Hotel, Chorley on 12-14 October 2012.

International conference

The 8th International Conference will be held in Japan this year from 23rd to 25th of November 2012. The Japanese group have been working hard to put together an interesting programme. Anyone interested in attending the conference should keep a check on the conference website details below. If you are interested in attending please let Arlene know turner.syndrome@tss.org.uk so that she can keep you informed and up to date. The TSSS are hoping to send a delegation to the conference. http://www.turner-japan2012.org

Masters Award

Nominations are now invited for the 2012 Keith & Marian Masters Award.
For further information and a nomination form please click here

Living with TS

Fiona, one of our members, recently took part in a video about managing her Turner Syndrome.
We would like to thank Fiona for assistance it is very much appreciated. She has done an excellent job we are very proud of her contribution to the project.
We would like to thank Genetic Alliance UK for putting together this excellent project.
Please click on this link and view the video
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2nd edition book

Turner Syndrome Lifelong Guidance & Support
Everything you need to know about Turner syndrome. 100 pages containing as many aspects as possible of living daily with the syndrome, from prenatal diagnosis through to recommended health checks for adult women with TS. Helpful tips for parents and teachers, information on footcare and personal experiences of life with TS and much, much more.
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Welcome

Welcome

The Society provides accurate and up to date information on Turner Syndrome and the many aspects of living with the condition on a daily basis. We hope you find our website useful and friendly.  

What is TS?

The following description of Turner Syndrome (TS) and explanation of some of the issues involved in living with the condition are not definitive and a doctor or endocrine specialist should always be consulted whenever a diagnosis of Turner syndrome has been given.
The Turner Syndrome Support Society [UK] and other International Turner syndrome support groups can help with practical information on living daily with TS and can in most cases offer contact with other girls and women with TS and their families.
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Treatment

There are a number of treatments available to those with TS, and each girl/woman should be treated according to her individual needs.
TS is a ‘cradle to grave’ condition and as such should be treated throughout life in a variety of ways.  The girl/woman with TS should be under the care of an endocrinologist [doctor specialising in hormones], initially a paediatric endocrinologist followed by attendance at an Adult TS clinic.
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Living with TS

It should be emphasised that each girl/woman with TS is an individual and what is relevant to one is not necessarily relevant to another.
Some babies have feeding problems or speech problems, and a speech therapist can help with both.
Some young girls have behavioural difficulties; this could be due to difficulty in concentrating, spatial awareness or hearing problems. Ask your GP, Health Visitor, Specialist or the TSSS for more information.
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How to join or donate

Membership of the Society is GBP 20 (UK) per annum (overseas GBP25) and provides many benefits. We are also happy to receive donations which enable the TSSS to continue to offer support to those with TS and their families, help us to create better awareness of TS amongst health professionals and the general public and to provide information on all aspects of living daily with TS to those who need it.
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50/50 Club

The Turner Syndrome Support Society invites you to support the TSSS 50/50 Club.
The 50/50 club not only raises funds for the society but also gives you the chance of winning a cash prize. 
The Club runs from January to December each year, at a cost of £1 per number, per month (you can buy as many numbers as you like!). This will be a total of £12 (per number) for the 12 months, payable in advance. You can join at any time; just adjust your payment for the months left in the year. 

How does it work? 
On receipt of your standing order payment to the value of £12.00 [complete and return the standing order mandate to YOUR bank then send  your completed application form, to the TSSS office the Society will then advise you of your allocated number. This individual number will remain with you for the duration of your membership.
3 lucky numbers will be drawn each month by an independent selector.
Prizes: 50% of the money per month goes to TSSS
The other 50% of the money is shared between1st prize, (50% less 2nd & 3rd prize), 2nd prize (£12) and 3rd prize (£6)
There is no limit to the amount of numbers you can have or how many times you can win in one year, as all numbers are entered in to the draw each month.
Download application form
Download standing order form

Donate to the TSSS

You can also donate to TSSS by post using our downloadable form or via Just Giving if you prefer.

Fundraising ideas

Click the wheel for lots of ways to raise funds for the Society!






Help keep our costs down!

The TSSS is a small charity and, although very happy to send out information on Turner Syndrome to all those who request it, does not have the funds to do this for free.
When requesting information please make a donation to cover the cost of photocopying and administration. Thank you.
Medicine and me

The TSSS would like to thank The Royal Society of Medicine for hosting and help in organising this free event for patients. This was a rare opportunity to have a day with such a high standard of expertise for the patients. The TSSS were very proud and grateful to be involved in helping promote and take part in the Medicine & Me programme.

Our thanks to Prof John Betteridge Dean of the RSM, his PA Sophie Baettig and Dr Gerry Conway Consultant Endocrinologist at UCLH, for helping put together the programme, which was both interesting and very informative to all who attended.

Many specialists made time to attend and gave excellent presentations on Turner Syndrome, which were very well received by all who attended. We heard from Dr Gerry Conway Consultant Endocrinologist, Dr Melanie Davies Consultant Gynaecologist and Reproductive Medicine Specialist both from UCLH in London, Prof David Skuse Head of Behaviour & Brain Sciences at Institute of Child Health, Dr Richard Stanhope Consultant Paediatric Endocrinologist from Portland Hospital and Dr Fiona Walker a Cardiologist from UCLH. We covered a wide range of topics such as how a diagnosis of TS is made; What Turner Syndrome is, living with Turner Syndrome, Fertility and Heart awareness. Our patient experts kindly shared their own personal experiences Kylie Smyth on the benefits of an early diagnosis. Carol Slater on living with TS and how it impact on her life. Meg & Sam Cubitt on the impact of a late diagnosis on both the girl who has TS and her family. All of these stories were heartfelt, powerful and honest and had positive messages throughout. Arlene Smyth spoke about the TSSS and the benefits of being a member.

Below are just a few of the numerous positive comments we received.

“I attended the meeting in London which you hosted yesterday. I have an 8 year old daughter with TS, and I wanted to thank you for helping to organise the event. I live in France and it was a pleasure to listen to specialists in English and to meet with other parents. Your daughter is wonderful, a true inspiration, as are you."

“The conference at the RSM was really good and very informative” 

“What a success the RSM meeting was.  I was especially pleased to see and hear Dr Fiona Walker, at last a cardiologist with an interest in TS.  Well done” 

“As a woman with Turner Syndrome, I wanted to meet others, who had been diagnosed like I had. Your conference on Tuesday in London seemed the perfect opportunity. I chatted with a lot of people there, and as a result I have a new group of friends. 
It was all a new experience, and something I wish I'd done years ago. Thank you again.” 

 
Sign our petition!
Please support the Turner Syndrome Support Society in our call for the government to Freeze the cost of prescriptions – sign our petition now!
The Prescription Charges Coalition has been campaigning for a number of years for prescription to be made free to people with all long term medical conditions.
In September 2010, the Government stated that they would not introduce free prescriptions but would look at ways to introduce ‘more fairness’ in the system.  
We believe the Government has an opportunity to do more to help people with long term conditions who are struggling to afford their medicines in the current difficult economic climate.
This is why we are now calling on the Government to freeze the cost of prescriptions until the end of the Parliament. 
As many people with long term conditions use Prescription Prepayment Certificates (PPCs) to spread the cost of their medicines and save money, we are also calling for the Government to continue last year’s freeze on the cost of PPCs until the end of the Parliament. 
Finally, we want the Government to work towards making prescriptions free for people with long term medical conditions in the future.
You can help by signing our e-petition: http://epetitions.direct.gov.uk/petitions/25087
You can also help spread the word by joining our Facebook causes page.
 
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