Adulthood with Turner Syndrome | Turner Syndrome Foundation

Adult


TSF Registry – Ask Questions


Connect – Star Sisters Unite!


Activism – Take Action

About TS

Adults who understand Turner Syndrome are more likely to have positive outcomes with their health and life.

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 the May 2019 Adult UPDATE   Quick Care Guide to Print
  4. Order the book, ‘Turner Syndrome Across the Lifespan
  5. Gather your medical records
  6. Write down your questions and concerns
  7. Seek medical advice
  8. Shop online for TS Apparel  Reading  Awareness Kits

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.

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
    1. Ask for name of pediatric provider(s) who care for girls with Turner Syndrome
    2. 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 as an adult with Turner Syndrome. It is up to you to find providers that are a good match for you.  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 would be 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?

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

  • geneticist
  • internist
  • endocrinologist
  • fertility endocrinologist
  • cardiologist
  • gynecologist
  • nephrologist
  • otolaryngologist (ENT)
  • dentist
  • or other specialist(s)

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.

Reproductive health is important to women with Turner Syndrome. 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 in adults 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.

Know your rights education, employment, and insurance issues affect an adult’s ability to learn, live independently, and access to the care she needs.

Advocate for Turner Syndrome. 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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