Dates for your diary
|Sat Mar 15 @12:30AM - |
Home Counties lunch
|Sat Mar 15 @ 2:00PM - 06:00PM|
London & S East Makeover, spa and afternoon tea day
|Sat Mar 22 @12:30PM - 04:00PM|
Durham & Newcastle meet
|Thu Mar 27 @ 9:30AM - 04:30PM|
Kidz in the middle exhibition
|Sat Apr 05 @12:30PM - 04:00PM|
Wales group meet
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.
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.
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.
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.
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.
How to join or donate
Membership of the Society is GBP 30 (UK) per annum (overseas GBP35) 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.
Rare disease day 2014Watch and share the official Rare Disease Day 2014 video! The seventh Rare Disease Day takes place on 28 February 2014. "Join Together for Better Care" and participate!
Join an activity taking place near you to demonstrate global solidarity. www.rarediseaseday.org
Donate to the TSSS
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.
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 and information to both girls and adult women with Turner Syndrome, their families and friends.
The Society enjoys a good relationship with relevant specialists to promote a good basis for education and understanding of the management of Turner Syndrome.
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 a TSSS newsletter
- have access to a membership network for social contact with others who share the same interest and concerns throughout the UK
- can attend an annual conference and a number of open days around the country
- get the opportunity to form lasting friendships, especially amongst the teenagers with TS
- access to information about TS and friendly advice.
By becoming a member, the TSSS can put you in touch with someone as close to where you live as possible or at least provide telephone or written contact via its contact network.
The TSSS is run by volunteers all closely involved with Turner Syndrome.
Membership is not compulsory but offers further benefits and the small membership fee enables TSSS to continue to offer support to others. The publication list gives details of information leaflets and guides that are available from the TSSS.