But just today a friend of mine said she was sure she’d read that Turner’s Syndrome have a high case of mental retardation. I had never heard that before from my doctors or from anyone. And TS being an “intersex” condition is also a new one for me.
Both sound completely preposterous.

The same friends who thought there was a high rate of retardation have inspired me to start a blog talking about my own experiences. I recently got pregnant without IVF and I am calling this my miracle baby. They encouraged me to share my story, which also baffled doctors growing up (I was labled non-mosaic, yet I started having all the usual sexual development at 17.

So, I’m inspired and just set up a blog at turnersbaby.blogspot.com

While I hesitated a long time to share and talk to other women with TS because I always felt like I didn’t belong (having less symptoms than most women – I think), I think it’s time to share my case and learn from other woman as well, since I’ve actually never met or spoken to another woman with TS in my life.

Since then, I really haven’t cared much if people know or not. I felt as though I was trying to hide something that made me who I am. Now, I like talking about it here for the various reasons we’ve discussed. There is still so much misinformation out there.

I could tell you stories of people I’ve met who really were worse off by not having all of the information. Why should we be ashamed of who we are?

Lindsey

And as for a disability…. absolutely not! Like you said, I have trouble reaching tall shelves (and I’m very creative about doing so! LOL!), and that’s about it. And, in fact, I worked in a school a few years ago where there were at least 5 women who were about my height, and none of the others had TS. As you said, a lot of people are ’short’ for a lot of reasons, and it’s NOT a disability.

That is actually one of the main reasons I don’t usually tell people- there is no need for me to be treated differently, nor do I want that. I’m not disabled. I also think it was a good thing I wasn’t diagnosed until I was in junior high (so there were no expectations of ‘disability’).

I used to go to the conferences when I was a college student, and I have met dozens of TS women. We are an amazing bunch.

Lindsey

I completely agree with what both of you said. As a fellow TS woman, I can’t believe how educated professionals are willing to marginalize and categorize us.

These attitudes surely don’t come from direct knowledge or experience with Turners patients. I guess it’s because we are so few and most do not meet us in their practice. But still, it is upsetting and the attitudes seem so antiquated.

How on Earth anyone could characterize Turners women as retarded is beyond me. Quite frankly, I don’t know any Turners women who haven’t at least earned a bachelors degree. I say that because it means that despite the fact that some may have learning disabilities, they are more than capable of managing the educational system.

Lindsey

You are SO right about the questioning whether you are a ‘real’ woman, and it does NOT make it any easier to be told that you really aren’t even FEMALE. Particularly for those of us who are mosaic or who are not 45X but who have one partially missing or partially repeated X chromosome… as you stated, no confusion about genitalia, no confusion about chromosomal gender. But a LOT of possible gender identification issues when you’re told you’re NOT what you ARE. I really honestly don’t think TS meets the definition of an intersex condition, and we are all most assuredly females!