| Living with TS |
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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. 
Girls 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]
Below are some of the words you may be hear during a consultation with a specialist. It is sensible to make a list of questions you would like to ask the doctor and take it with you to your appointment. Do not be afraid to ask questions, the doctor will not know what is concerning you unless you tell him/her.
Amniocentesis:- taking a sample of the fluid that surrounds a baby in the womb so that the genetic material of the baby can be analysed.
Aorta:- the main blood vessel into which the heart pumps blood.
Aneurysm:- a balloon-like swelling in a blood vessel.
Chromosome:- part of the genetic material present in all human cells and is inherited from parents.
Chorionic villius sampling:- taking a sample of the membrane that surrounds a baby in the womb so that the genetic material of the baby can be analysed.
Cubitus valgus:- describing elbows which cannot be fully straightened.
Endocrinologist:- a doctor who specialises in glands/hormones.
ENT specialist:- doctor who specialises in conditions that affect the ear, nose and throat.
Epicanthus:- the vertical fold of skin from the upper eyelids that cover the inner corner of the eye.
Growth hormone[GH]:- the hormone that stimulates growth.
Hormone:- chemicals produced by one part of the body that influences what happens in other parts of the body.
Hypertension:- blood pressure that is higher than normal.
Insulin:- hormone that causes cells in the muscles and liver to take sugar out of the blood.
Menopause:- the time of life when a woman’s ovaries stop producing eggs and she stops having periods [monthly bleeds]
Menstruation:- monthly bleeding [periods] when parts of the lining of the womb are discharged if a woman is not pregnant.
Mixed gonadal dysgenesis:- condition in which the female sex organs[ovaries] do not develop properly and may contain some tissue normally found in male sex organs[testicles]
Mosaicism:- when cells do not all contain identical chromosomes – two different chromosome patterns, a person has one type in some cells and the other type in all their other cells.
Myopia:-short sightedness.
Oestrogen:- the hormone involved in female sexual development and functioning of the female reproductive system.
Ovaries:- part of the female reproductive system where eggs develop.
Orthodontist:- doctor who specialises in correcting the position of teeth.
Paediatrician:- doctor who specialises in treating children.
Palate:- roof of the mouth.
Pterygium colli:- [web neck] the extra folds of skin which stretch from the neck to the shoulders.
Progesterone:- a hormone that acts on the uterus in partnership with oestrogen.
Ptosis:- droopy eyelid[s]
Puberty:- the time when the body begins to develop sexually.
Syndrome:- used to describe a disorder when a group of symptoms occur together.
Sex chromosome:- part of the genetic material that determines whether a person is male or female. X or Y chromosomes, males have one X and one Y, females have two X chromosomes [although this differs in TS]
Thyroid hormone:- hormone that helps to control metabolism - the chemical reactions that occur in the body.
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