Joined Sep 29 2012
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Riverhead, NY
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Colleen's Turner's Syndrome Page

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I am the mother of a 17 yr old who was diagnoised before birth with what the dr called "weak" Turner's. When I brought her home from the hospital, she had her period (as can happen with females). I was very confused. Took her to specialists & all said the same thing-she shows no signs of Turners. By the time she was 5 they told me I didn't need to being her back unless she didn't go through puberty. Well she did, got her period at 13 & has normal breast growth. In fact, she is 5'4"-taller then me! Now all of a sudden she has stopped getting her period. The last one was 7/4/12. She happened to mention this the other day & Turner's popped right into my head. I thought we didn't have to worry about it-that it was some kind of mistake. I never told her. Now that I know, I have set up dr appts. I have to tell her before the appts & I am afraid, worried that she will be mad at me. I never told her because I really beleived she was in the clear based on what the drs told me & her getting her period. I have done some reading & now realize that this may not be the case. 17 yrs ago there was 1 Turner's website, now 17 yrs later there is so much more information. I didn't have all this info back then. I didn't know that she could get her period, only to have her ovaries shut down. My heart is breaking for her. I am afraid of the testing she will have to go through. Most of all, I am worried about her feelings & how she is going to handle this. If anyone has any advice, wants to tell me their experience, I would really appreciate it. Mary

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Reply [email protected]
4:08 PM on October 5, 2014 
I was also getting familiar with the monthly "friend"; I had started HRT (hormone therapy) about 7 years old and stopped around 8 years ago,after surgery to prevent clot in brain.At 50 yrs old, I am only 4 ' 3" (or so) in height and enjoy time with my older brother and younger brother. I love sharing my heart with their families.