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.
There are a number of treatments available to those with TS, and each girl/woman should be treated according to her individual needs.
Teen and girl with TSTS 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; there, in addition to an adult endocrinologist, there may be, for example, a gynaecologist/obstetrician present and possibly, hearing and cardiac specialists. A psychologist may also be available to help with problems which may arise from low self esteem and specific learning difficulties.
Those diagnosed in utero or at birth should be under the care of a paediatrician immediately after birth. Girls with TS usually grow at a normal rate until around 3 or 4 years of age when their growth may begin to slow down. In the majority of girls with TS it is possible to increase their final height potential with growth hormone[GH] treatment and this will be discussed with parents by a paediatric endocrinolgist. The success of growth hormone treatment depends on a number of factors such as the age at which GH treatment is started, compliance and when oestrogen is introduced. There is also the possible use of oxandrolone [an anobolic steriod] to promote growth, and again this will be discussed by the specialist. Oestrogen is used to induce secondary sexual characteristics i.e breast development and at an appropriate age is used with progestogen to induce withdrawal bleeds [periods]. Oestrogen is also important for proper mineralisation of bones.
Women with TS are able to have an entirely normal sex life. Although girls/women with TS have non- functioning ovaries they have a normal uterus and vagina and it is possible that some women with TS will be able to have a child using a donor egg and IVF treatment. But as in the normal population this is not guaranteed. Babies with TS born with a heart murmur or narrowing of the aorta [coarctation] will need an expert cardiological assessment and occasionally need surgery to correct the problem.
Girls with TS are more prone than others to middle ear infections, and recurrent infections can lead to deafness if not promptly treated. A consultation with an ear, nose and throat [ENT] specialist would be helpful. All adults with TS need regular hearing checks because a degree of hearing impairment is common.
High blood pressure is quite common in adolescents and adults with TS and should be checked regularly and if necessary treated. There is also a slightly higher risk of diabetes and thyroid gland disorders in women with TS, and this too should be checked.
Osteoporosis can be a problem due to the lack of oestrogen, and HRT [hormone replacement therapy] can possibly help in preventing the early onset of osteoporosis.
Regular health checks are a must for women with TS, and attendance at a specialist adult TS clinic is desirable. These clinics are specifically for women with TS and will usually have specialists from a variety of disciplines present. Ask your GP or contact the TSSS for details of the nearest clinic to where you live. Some hospitals have specialist adolescent clinics to aid the smooth transition from paediatric to adult care.
Occupational therapists, speech therapists, psychologists, educational psychologists, podiatrists, orthodontists, ENT, cardiologists, obstetrician/gynaecologists, endocrinologists, geneticists, dieticians, audiologists, endocrine nurses, ophthalmologists are all specialists in their fields who can possibly help in the care and treatment of those with Turner syndrome. There are also support organisations which can offer practical tips and contact with others with TS.