New Diagnoses: My daughter has Turner Syndrome…What do I do?

My Daughter has Turner Syndrome...What do I do?
What to do and expect when your daughter is diagnosed with Turner Syndrome

If your daughter was recently diagnosed with Turner Syndrome, you may be confused with all the information you’ve probably been bombarded with, and worrying “What is going to happen to my daughter? What do I do?”

I know it can be devastating to learn, but there are things you can do NOW to ensure that your daughter still grows up to be healthy and happy. As a girl with Turner syndrome myself, I can assure you of this and would like to share with you some things I learned from personal experience so you don’t have to learn the hard way like my parents and I did.

Here you can read about Characteristics of Turner Syndrome to get an overview.

Now, here are some things that your daughter may be at risk for and experience as she grows up:

  • Amenorrhea (no period)
  • Celiac Disease or mild Gluten intolerance
  • Diabetes
  • Hearing Problems
  • Heart defects
  • High Blood Pressure
  • Horseshoe Kidney
  • Hypothyroidism
  • Learning Disabilities (nonverbal)
  • Lymphedema
  • Ovarian Dysgerminoma (a rare type of ovarian cancer)

Obviously every girl with Turner syndrome is completely unique and will have different needs.  She will not experience all of these.  Make sure your doctor is extremely knowledgeable about Turner syndrome and stay up to date yourself.

Here are some specialists you should take your daughter to see:

  • Audiologist
  • Cardiologist
  • Endocrinologist
  • Nephrologist
  • Neurologist
  • Oncologist (probably one who specializes in gynecology)

 

Here is what I do personally to stay healthy, now that my brush with cancer is behind me:

  • Gluten free vegetarian diet
  • Hormone Replacement
  • Regular exercise

 

I will go into more detail in my upcoming book “As a Butterfly: Turner Syndrome Survival Guide”, which will be available within the upcoming week. Please purchase and read this, as the above list is only an overview and I share more of my personal experiences.  If you have more specific questions please feel free to contact me.

 

Thanks so much! 🙂

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