Patient Comments: Turner Syndrome - Diagnosis

How was your Turner syndrome diagnosed?

Comment from: katyq85, 25-34 Female (Patient) Published: December 30

I was born in 1985 two weeks before my mom's 31st birthday. A military doctor happened to be there and told them I needed to be tested for Turner syndrome. My mom's cousin was also born with Turner syndrome.

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Comment from: megrae18, 19-24 Female (Patient) Published: July 24

My mother was pregnant with me when they diagnosed me with Turner syndrome. They performed an amniocentesis and then told my mother I had Turner's. I was born April 7 and I am on a medication for under-active thyroid. I am healthy and well and doctors didn't think I would even get breasts, but I have a broad chest. I was bummed I have to live with this for the rest of my life, but I am happy and I have a great life ahead of me.

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Comment from: 19-24 Female (Patient) Published: March 25

I was diagnosed with Turner Syndrome at 17, when I was a senior in high school. This was at an age when my peers were talking about getting married and having children in a few years. Knowing I would not be able to have biological children was difficult for me emotionally. I am now 24 and have hypothyroid, struggle with weight, and high blood pressure. As I get older, I'm starting to look into other options for having children, like IVF and adoption. I feel that everything happens for a reason.

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Comment from: kathy, 45-54 Female (Patient) Published: February 01

I was 16 when I was diagnosed. I never really understood the enormity of the sickness. I did the treatment. I was told I couldn't have children, but I now have a beautiful daughter with the help of I.V.F and an egg donor. I suffer with weight issues, thyroid, eye problems, a hearing disability and high blood pressure. But I have lived a beautiful, normal life. This sickness never stops you from living and achieving your dreams and goals. I have learned to live with it. Every now and then I get down but my daughter makes me feel like I am a great woman and mother.

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Comment from: ashnco, 25-34 Female (Patient) Published: December 07

I was diagnosed with Turner Syndrome when I was 11 years old. They were running a blood test for another condition I have when they found it. All I have to say was it answered a lot of questions, like why I had so many moles, ear infections, trouble in math, etc. My pediatrician, who did not order the test, called on a Sunday night to apologize to my mom for not catching it sooner. Apparently, while I have always been short, I was taller than most girls my age with Turners. Through taking growth hormone shots almost everyday I'm 5'3 and on birth control for several years. I have regular periods. Overall I live a normal life but will still check in with the specialists to make sure no new problems pop up due to this.

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Comment from: Roseshepherd, 7-12 Female (Caregiver) Published: October 15

My younger sister was diagnosed in the womb, but doctors didn't realize it. They thought she had down syndrome and actually asked my mother if she wanted to terminate the pregnancy. After her birth they were able to properly identify Turners Syndrome and immediately set her on growth hormones (or as immediately as they do for Turners girls). Because the growth hormones seem to also help her muscles she is now one heck of a really short gymnast.

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Comment from: Turners Girl, 35-44 Female (Patient) Published: May 30

I have Turner Syndrome. I am 38 years old. I was not diagnosed until I was 15. Back then they did not have all the medical technology they do now and my symptoms were short stature and not starting puberty. I was started on growth hormones and a few years later my doctor tested me for low thyroid and put me on thyroid medicine that I still am on today. I am 5'2. As an adult I still see my endocrinologist once a year. This year I did start with high blood pressure and last year I had a cataract in my left eye. I have a great life and am for the most part healthy.

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Turner Syndrome - Symptoms Question: What were symptoms associated with Turner syndrome in you or someone you know?
Turner Syndrome - Treatment Question: What kinds of treatment have you or a relative received for Turner syndrome?

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