For Youth With Turner Syndrome

Knowledge of Your Condition

  • Know what causes Turner syndrome (missing all or a piece of one of the X chromosomes).
  • Understand the medical conditions that young women with Turner syndrome are at risk for:
    • ovaries that don't work properly-need to take hormones for breast development, menstrual periods, and strong bones-infertility
    • thyroid problem
    • diabetes
    • celiac disease
    • high blood pressure
    • decreased bone strength
    • potential heart problems and weakness of the large artery that leaves the heart (sudden chest pain or tightness in the chest could represent a serious problem; seek emergency care!)
    • hearing problems
    • learning difficulties
    • psychosocial issues (maturity level/ social anxiety)
  • Understand options for becoming a mother.
    • adoption
    • donated egg
    • risk of carrying a pregnancy

Knowledge of Your Medical Care

  • Know the name of your primary care physician and the contact information.
  • Know the name of your gynecologist or endocrinologist and their contact information. Other subspecialists such as reproductive endocrinologists, cardiologists, and geneticists may be needed during certain stages of your life.
  • Know the name of your other specialists and their contact information.
  • Know how often you should be seen by your physicians.
  • Know how frequently you should be monitored for your existing medical conditions.
  • Know how frequently you should be monitored for the medical conditions for which you are at increased risk.
  • Know the names of your medications and what they are for.
  • Know how your medicines should be taken.
  • Know what happens if they are not taken regularly.

Knowledge of Insurance Coverage and Managing Your Prescriptions

  • Do you have health insurance?
  • Can you be covered on your parent’s insurance until you are 26?
  • Can you get insurance through your college or work place?
  • Know where you get your prescriptions filled and learn how to call for a renewal.

Knowledge of Ways to Stay Healthy

  • Try to maintain a healthy weight for your body and avoid obesity-related problems (regular exercise, learn about healthy eating).
  • Have your blood pressure monitored, and if elevated, treated.
  • Take your estrogen regularly (important for bone strength, heart health).
  • If you are feeling sad or anxious don't hesitate to contact your primary physician regarding mental health counseling.
  • Exercise regularly (helps bone strength, heart health, weight, risk for diabetes, and mental health).

Knowledge of Support/Advocacy Groups for Information