Why did it come as a surprise? Well, you see, I’m female in every sense of the word, and so are all other girls and women with Turner Syndrome. We either have a 45 X or 45 X with part of the other X chromosome (mosiac) karyotype rather than the “normal” 46 XX female karyotype. There is no Y to be found (Y determines the sex of a baby). All patients with Turner Syndrome are female. Yes, there are conditions similar to Turner Syndrome that affect males, but there is always at least a partial Y chromosome involved. That is why the label “intersexed” confuses me when it comes to Turner Syndrome.
It might not mean much, but when you are a teenager dealing with Turner Syndrome (and I plan on discussing this particular topic much more in the days and weeks to come), you already question whether or not you are a “real” woman due to the fact that most women with Turner Syndrome are infertile. My experience growing up with Turner Syndrome and my understanding of the perceived gender issues that it entails lends me to question why it is labeled as “intersexed” at all. Intellectually, I understand that any variation of the 46 XX or the 46 XY norm is labeled as “intersexed,” but as a woman who has lived with an “intersexed” condition, I question why the medical community has to split hairs in this case. I find it unsettling.
The article below is thought-provoking. In my post I didn’t even address how the intersex movement is being co-opted by the transgendered movement. Quite frankly, I don’t need to right now. The author of the article below, who has an intersexed condition herself, does it well.
Lindsey
As someone who also only recently found out that some people are calling TS an ‘intersex’ condition, I’m with you. Not only puzzled, but really kind of offended. I am female, as is every other woman I know with TS. It’s bad enough having my doctor (who I really do love, but she occasionally blew me away when I first starting seeing her) say, “You know, you’ve really changed my mind about TS.” She had also been under the impression that women with TS were mentally retarded. This bothers me even more than that– almost as much as the ‘professor’ in the graduate level Child Development class who called girls/women with TS ‘creatures.’ ::SIGH::
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!
Actorgirl, thank you so very much for commenting. I couldn’t agree with you more. It seems to me that the most likely people to treat us (Turners women) as anything other than the women that we are are in fact doctors. It seems as though all too often doctors can’t get past the diagnosis to see that a human being is there right in front of their eyes.
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
Dealing with a child w/ genetic abnormalities, i too have researched this topic widely. Scientist call all Turner syndrome girls female, even though some have a y in some of their genetic makeup. TS sufferers can also have gonads which is further evidence that it is inter sexed.
My daughter, 14 months, also has Turners syndrome. As I read your blog I was surprised when you put ” There is no Y to be found (Y determines the sex of a baby). All patients with Turner Syndrome are female. ” Your first statement is not always true while the second one is. My daugther’s kareotype is 45XO (90%), 46 XY (10%). This does NOT make her male; she is definitely female. I also don’t like how it is considered an intersexed condition. However, I try not to let the label aggravate me. You also stated that as “a teenager dealing with Turner Syndrome…you already question whether or not you are a “real” woman due to the fact that most women with Turner Syndrome are infertile.” Do you have any suggestions on what I can so that when my daughter is a teenager she doesn’t feel that way? Thank you!
Carriecubs7,
I am so sorry that I never did get back to you regarding dealing with a teenager with Turners. I’d love to talk to you about the subject, but I’m not sure what advice to give other than to try to provide her with opportunities to meet or talk with other TS women. It made a huge difference in my life and made me feel a little less alone.
Please e-mail me @ lindsey.j.russell@gmail.com if you’d like.
Thanks,
Lindsey
I’d also suggest making sure she begins Herat a developmentally appropriate time. It has been shown that delayed physical development is much more damaging psychologically than short stature. And treat her as the age she is not the age she looks. There is a limit as to what you can do besides listen to her and support her as she works through her feelings. But if you ensure that she is experiencing the teen ‘milestones’. At the same time as her peers, and that your expectations for her aren’t any different than for her siblings/peers, that will go a long way to making her feel less ‘different.’. And as Lindsey said, give her the opportunity to spend
time with other TS women.
Thanks, Lindsey, for this blog!
Actorgirl, very good advice!
Also, thanks for your support! I need to write more on issues relating to TS, but it is so deeply personal. It is hard. Of course, as you know, it gets to literally to the foundation of who I am.
I really wish that there wasn’t so much misinformation out there. We all deserve better – TS women and girls, parents, etc.
Lindsey
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thaniks for sharing. I went to nursing school as well as graduate school and have never heard about this condition. You learn something new everyday. You have my deep condolences and I am also very much an ex catholic who was one of tens of thousands of kids sexually abused by a priest.
I’m very sorry to hear that.
Lindsey
Well it was a good thing because I started studying the bible for myself, got a degree in it and even became a baptist minister for a while. What I learned was that 95% of all catholic doctrine is in direct contradiction to biblical teachings. I can prove it if you are interested