Taking Control of Your Health Journey with Turner Syndrome

Adult women have already experienced the major developmental phases of living with Turner Syndrome.  Women who understand TS are more likely to have positive outcomes. It is never too late to gain control of your health. If you haven’t seen a doctor in years or are feeling a change in your health or emotions, it may be time to put yourself first and find providers who can help.

Learn What You Need to Know:

    1. Join the TSF REGISTRY ask questions & more.
    2. View the ABOUT TS and HEALTH website pages.
    3. Read about Management of Turner Syndrome in adults
    4. Look at our Quick Care Guide to Print
    5. Order the book, “Turner Syndrome Across the Lifespan”
    6. Read our FAQ – healthy aging.
    7. Gather your medical records.
    8. Write down your questions and concerns.
    9. Seek medical advice.

Finding a Doctor for Adult Care of Turner Syndrome is not Always Easy.

  1. Visit the MAP for regional care.
  2. If you cannot find a physician to care for you, you may consider contacting your local children’s hospital, department of endocrinology
    • Ask for name of pediatric provider(s) who care for girls with Turner Syndrome
    • Ask the pediatric provider for their referring adult care providers to children who age out of their care
  3. For a general hospital you can do the same and ask for a referral

Medical Team

Organizing your medical team is essential for a continuum of care. It is up to you to find providers that are a good match for you.  

Commonly sought specialists include:

  • Geneticist
  • Internist
  • Endocrinologist
  • Fertility endocrinologist
  • Cardiologist
  • Gynecologist
  • Nephrologist
  • Otolaryngologist (ENT)
  • Dentist
  • Or other specialist(s)

Steps to take Afterward:

After you receive a referral, call the medical office and speak with the doctor or nurse practitioner to ask insightful questions, such as:

  1. Does their practice care for women with Turner Syndrome?
    • If no, ask:
      • If they are willing to learn more to provide ongoing monitoring and care?
      • Offer to provide the clinical care guidelines.
      • Send them a link via email or print and bring to the office.
    • If yes, ask:
      • Do they have a copy of the updated clinical care guidelines, 2017?
      • Have they cared for women with TS?
      • Are they currently caring for women with TS?
      • How many women with TS have they seen in their office?
      • Are they aware of any support groups for TS within their network?
      • Mention some of your health concerns and confirm their willingness to help you receive essential ongoing evaluations and treatment.
  2. Do you feel they are responsive to your concerns?

Cardiovascular Health

Cardiovascular health is a paramount health concern for women. It is recommended that a baseline MRI/MRA be completed. If you never had this test, speak with your doctor to schedule this important test.

In the absence of bicuspid aortic valve, or other significant disease at the initial screening, TTE or CMR should be performed every 10 years in adults or prior to anticipated pregnancy. 4.9 2017 guidelines

Consider protecting yourself by carrying an Emergency Contact Card on your person to alert others of your medical condition and risks.

Reproductive Health

Reproductive health is important to women. Adequate estrogen levels help to build strong bones, improve fat and cholesterol metabolism, improve sexual functioning, reduce the risk of colon cancer, and strengthen the memory.

Cognition Issues

Cognition issues in women with Turner Syndrome include attention, difficulty with visual-spatial tasks, such as mentally rotating objects in space. Driving can be challenging as well as using visual maps to navigate.

Workplace Rights

Know your rights; education, employment, and insurance issues can affect a woman’s ability to learn, live independently, and access to the care she needs.

Refer Knowledgeable Adult Care Providers

We are always in search of knowledgeable adult care providers. If you have a recommendation, we would love to hear from you!

Advocate and Take Action

Advocate for TS. There are many ways and reasons to GET INVOLVED.

TS does not define you! Take action. We stand together with you to make a difference.

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