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Frequently Asked Questions

  • How common is Turner syndrome?
    Turner syndrome occurs in 1 of every 2,000-4,000 births. More facts about Turner syndrome.
  • What is most important to know about Turner syndrome?
    Every person living with TS is different. Turner syndrome is simply a part of who you are and what makes you unique. It’s very important that you manage your health care well, so that you can live your life to the fullest. The Turner Syndrome Society has been around for 34 years, and we are here to help and encourage you!
  • What is Turner syndrome (TS)?
    Turner syndrome (TS) is a genetic condition that affects girls and women. Females generally have two complete sex chromosomes in every cell in their body, represented as XX. Those with TS may be missing the second X, or the X may be missing pieces or not formed correctly. There are different types of TS and you can learn more about the genetics of TS here.
  • Is it possible for males to have Turner syndrome?
    TS experts say males should not be diagnosed with TS but rather use their karyotype as the diagnosis. Some individuals missing their X chromosome also have both male and female organs. We are aware that doctors diagnose those individuals with Turner syndrome. Our organization does our best to accept, support and respect anyone touched by TS.
  • What Causes Turner syndrome?
    Turner syndrome happens when genetic information gets lost during conception. TS cannot be prevented and is not related to the age of a parent, use of drugs, or environmental hazards. Sometimes TS may be inherited if a woman with mosaic TS becomes pregnant. Mothers with mosaic TS are usually unaware of their own diagnosis until after their child is diagnosed. If you are interested in the genetics of TS, click here.
  • What is the survival rate of Turner syndrome?
    Turner syndrome occurs in 1-2% of conceptions and, unfortunately, only 1% of those survive through pregnancy.
  • What age is Turner syndrome diagnosed?
    People can be diagnosed with TS at any age. In the United States, many girls receive a diagnosis soon after they are born. It’s also common for girls to be diagnosed between the ages of 2-14 because they are short or have not had a period. If you are over 50 years old and think you have TS your doctor will order a few extra tests to find out if you actually have TS.
  • I’m interested in finding/starting a group or organizing an event in my area. Where do I begin?
    We look forward to you becoming more involved! To find out if there is a support group near you, click here. If you would like to contact a group leader or find out more about starting a group, hosting a TSSUS one-time event, or have questions about events. Call 800-365-9944 or use the Contact form.
  • How can I find a doctor or mental health expert in my area that knows about TS?
    Hopefully the TSSUS doctor and provider directory will list some doctors in your area, click here to check. If you are unable to find what you are looking for, consider joining our Facebook group and ask for recommendations there or call us 800-365-9944. TS is a rare condition, and many doctors are not familiar with the recommended treatments, but they are willing to learn and help you. If your doctor is willing to manage your care based on the TS Clinical Practice Guidelines, then consider helping them learn more. Any doctor can contact us and we will give them the number and or email for a TS specialist who will be happy to answer their questions.


about Turner Syndrome

Click here to read short inspiring stories written by people touched by Turner syndrome.

Still have questions:

Email a question or comment to us.

Ask your question on the TSSUS Facebook Group page. 

Call 800-365-9944 or 832-912-6006 if you have an urgent question.

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