Turner syndrome

Symptoms of Turner syndrome

There are lots of possible symptoms of Turner syndrome.

Everyone with the condition is affected differently, but almost everyone will:

• be born smaller than usual and grow up to be shorter than average
• have underdeveloped ovaries, which can affect puberty and cause infertility

There are also a wide range of other physical features, characteristics and health problems that may affect people with Turner syndrome.

Turner syndrome does not usually affect intelligence or language and reading skills, but it may cause some types of learning difficulties.

Diagnosing Turner syndrome

Turner syndrome may be diagnosed in babies and children:

• at birth or during childhood when the typical features or symptoms of the condition are noticed – a blood test can confirm the diagnosis
• during pregnancy if problems with the heart or kidneys are found during routine ultrasound scans

If you're pregnant and your maternity team think your baby could have Turner syndrome, you may be offered tests to check for the condition. This could be either:

• chorionic villus sampling (CVS)
• amniocentesis

Causes of Turner syndrome

Turner syndrome is a genetic condition, caused by a missing or partially missing sex chromosome.

It's not possible to prevent Turner syndrome.

Very rarely it can be passed to a child by a parent, but most of the time it happens by chance. It is not linked to age or anything the parents did before or during pregnancy.

How Turner syndrome affects your life

Turner syndrome can slightly reduce how long someone is expected to live, but most people should be able to live a relatively normal, healthy life.

It's important to have regular health checks and early treatment for health problems. For example, you or your child may have regular tests to check your blood pressure, bone density and how well your thyroid gland is working.

Some people with Turner syndrome experience problems at school, home or work if they have learning difficulties, or during puberty. This can lead to low self-esteem or depression.

But it's important to remember Turner syndrome is different for everyone.

Treatment for Turner syndrome

There is currently no cure for Turner syndrome, but there are treatments and support to help children and adults have the best possible quality of life.

A range of health professionals may be involved in your or your child's care. They'll help to create a care plan and advise you about which treatments may be needed, depending on your or your child's symptoms.

Treatments you or your child might need may include:

• hormone therapy to support growth and puberty, and help keep the womb and bones healthy
• talking therapies and counselling if you or your child feel depressed or have low self-esteem
• support for learning difficulties if you feel your child needs extra support
• treatment for infertility, such as egg donation and IVF (in vitro fertilisation) if you have Turner syndrome and would like to have children

Help and support for Turner syndrome

If you or your child have Turner syndrome, health professionals will be there to support you.

You may also find it helpful to get support from other people with Turner syndrome, or parents of children with Turner syndrome.

Turner Syndrome Support Society

The Turner Syndrome Support Society is a UK charity that provides a range of support and information for people affected by Turner syndrome.

• Website: tss.org.uk
• Helpline: 0300 111 7520
• Turner Syndrome Support Society: Turner syndrome fact sheets

Recording information about you and your condition

If you or your child has Turner syndrome, your care team will pass information on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

The NCARDRS helps scientists look for better ways to prevent and treat Turner syndrome. You can opt out of the register at any time.