Provider Assessment of Skill Set

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

• Turner Syndrome Foundation - turnersyndromefoundation.org
• Turner Syndrome Society - turnersyndrome.org
• Magic Foundation - magicfoundation.org
• Hormone Health Network - hormone.org