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.
Again it is 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.
Some girls with TS may have difficulties at school and with some areas of their education. Because of their short stature, physical education lessons may be a problem as well as possibly some subjects such as mathematics. These can normally be resolved, particularly if teachers are aware of the problems which can be associated with TS. Girls who may have hearing problems should be allowed to sit at the front of the class. Sometimes a girl with TS may benefit from having a statement of special educational needs [statemented]. The TSSS has produced an excellent booklet "How to help your child survive and succeed at school - A Guide for parents and teachers" an Information booklet which may help parents when explaining TS to their daughter’s teachers.
Teasing and bullying may also be a problem, and parents should be aware of this and notify the school as soon as they think there may be a problem. Teenagers might find it difficult when their peers are entering puberty, and their concerns should be addressed. Treatment these days normally allows for the girls to enter puberty along side their peers, but this depends on the individual and the treatment she is receiving. This should be discussed with the specialist. Women chattingGirls and women with TS benefit from meeting others with the condition, and this is particularly true of the teenagers.
Low self esteem can become a major concern, and a consultation with a clinical psychologist may help with this. Women with TS may have difficulties in the work place and again could possibly be helped by consulting a Disability Service Adviser [details can be obtained from local Employment Service offices].