Patient Comments: Turner Syndrome - Diagnosis

How was your Turner syndrome diagnosed?

Comment from: J.R.Dowd, 45-54 Female (Patient) Published: March 30

I was 16 when first diagnosed with turner syndrome. My mother had become concerned when I had not started to menstruate and had underdevelopment of secondary sexual characteristics. After referral to a specialist/endocrinologist, the diagnosis was made. I am now 53 years old and work as a registered nurse. Yes I am short statured (one of the symptoms related to turner's), however, I lead a fulfilling life and love to travel. I am also blessed with a loving family and good friends. I also have a niece and nephews whom I adore.

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Comment from: reedjaimel, 3-6 Female (Caregiver) Published: March 16

My daughter was suspected of having Turner syndrome at birth and was diagnosed at only a few weeks old. She was found to have a coarctation of her aorta which was repaired when she was 18 months old. She began growth hormone injections at 3 years of age. Today she is six and doing very well.

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Comment from: Broadway Babe, Female (Patient) Published: April 11

I was diagnosed with turner syndrome when I was still in my mother's womb. But, I didn't find out until elementary school. Not a very exciting diagnosis, but anyway, I'm lucky because I'm a mosaic, which means I have only half a chromosome missing.

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Published: October 25

Well I have not been diagnosed with Turners syndrome. But I am a mother to be where my baby girl has it. I am not sure what to expect and what not that's why I am have been doing research and what not. I want to be able to help my daughter to be in all ways I can and help her understand it more and for myself more. I figure if maybe someone who has it could explain more to me than what I can get from reading. Is there anyone who could possibly tell me more on what to expect and how I could prepare myself to be able to help my daughter better.

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Comment from: dlr, 45-54 Female (Patient) Published: June 24

I was diagnosed at birth with Turner's syndrome. I was swollen all over at birth. My parents were told I would not be able to walk, talk and would be mentally retarded. Today, at age 54, I walk just fine, can talk a blue streak and did great in school. In 5 quarters of college I got all A's and 1B. I am not mentally retarded. My right foot and ankle are still swollen, I have beginnings of osteoporosis, and a small leak in my aortic valve. I was put on growth hormones at age 12 and now am 4'11". I was thin but I am now heavy. I am married and we adopted a son who is now 22. I am a legal secretary, loving life.

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Comment from: mdnit1, 35-44 Female (Patient) Published: April 12

I was diagnosed with turner syndrome at 16 when it became apparent that I wasn't developing as well as the other girls in school. I was born with a heart murmur which I outgrew and my blood pressure is wonderful. I stand 4'10" tall and the webbing on my neck and hands are minimal. However the 4th and 5th toes on both my feet appear to be switched around. I was on estrogen for a month which helped me develop my breasts. I have not been on any hormones since. I have a normal sex life and walk with a slight hunch in my back. However with constant reminders I am able to walk straight...I just chalked it up to bad posture! Who knew...I had seizures growing up as well which I also outgrew and doctors said I would't live past 2. Today I am 41 years old and lead a very productive life and thinking about going back on hormones to tame these awful hot flashes.

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Published: February 28

I was 15 when I was diagnosed with Turner's. I had to see an endocrinologist at a children's hospital and had blood work and other tests run to get my diagnosis. I had my ovaries removed and have been on hormone therapy ever since.

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Comment from: Besa, 19-24 Female (Patient) Published: April 11

When I came to Norway I was diagnosed with turner syndrome at 3 months old. The doctors saw me and saw that I had swollen feet and arms and saw that something wasn't right and told my parents that I have turner syndrome.

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Patient Comments

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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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