Patient education: Turner syndrome (The Basics)

What is Turner syndrome? — Turner syndrome is a genetic problem that affects only females. It keeps a child from growing normally and from developing normal ovaries. It can also cause problems with the kidneys, heart, and other organs.

What are the symptoms of Turner syndrome? — Children with Turner syndrome can:

●Be short

●Have a square-shaped chest

●Be born with swollen or puffy hands and feet

●Have a wide neck (sometimes called "webbed neck")

Children with Turner syndrome do not have normal ovaries, so they usually do not go through puberty on their own. That means they do not form breasts or start having periods unless they are treated with female hormones. They also do not grow as much as they should unless they take growth hormone shots.

Children with Turner syndrome can have other problems, including:

●Heart problems

●Kidney or liver problems

●Thyroid disease

●Hearing loss and ear infections

●Eye problems

Children with Turner syndrome are usually as smart as other children. But some have trouble with certain tasks, and need extra help in school. Doctors might suggest special testing to figure out what kind of support a child needs.

Is there a test for Turner syndrome? — Yes. If a doctor or nurse thinks a child might have Turner syndrome, they can order a blood test to look for the genetic problem that causes it.

How is Turner syndrome treated? — There is no way to cure Turner syndrome, but there are ways to reduce the problems it causes. Children can be treated with hormones to help them grow to a normal height and to go through the changes that normally happen at puberty.

At various points throughout their lives, people with Turner syndrome must also be checked for the problems it can cause. It is especially important to check for heart problems, which can be serious. This involves getting special X-rays to check the condition of the heart. Girls and women with Turner syndrome should also get blood tests to look for liver, thyroid, and kidney problems, and hearing and vision tests.

Can a person with Turner syndrome have children? — Even with treatment, most women with Turner syndrome can't get pregnant naturally. This is because their ovaries no longer contain eggs. Some people can get pregnant with a treatment called "in vitro fertilization" or "IVF," which can be done using another person's eggs.

If your child has Turner syndrome, their doctor can talk to them about options for having children in the future. If you have questions, be sure to ask, even if your child is still young.

What will my child's life be like? — Girls with Turner syndrome need special medical care for their whole lives. As your child grows up, make sure they understand that they should keep getting check-ups every year. The doctor should check for signs of:

●Heart problems

●Thyroid disease

●Diabetes

●High cholesterol

●Liver problems

●Hearing loss

●Eye problems

●Osteoporosis (a condition that weakens bones)

The Turner Syndrome Society of the United States has more information on the types of care people with Turner syndrome need. They can be reached at 1-800-365-9944 or www.turnersyndrome.org.

More on this topic

Patient education: My child is short (The Basics)
Patient education: Normal puberty (The Basics)
Patient education: Learning disabilities (The Basics)

Patient education: In vitro fertilization (IVF) (Beyond the Basics)