Turner Syndrome and Sex – Ramblings of a Misguided Blonde
The above link actually goes to a “shadow” blog I use on WordPress. Essentially, I import all of my posts from blogger into my WordPress account. There are several reasons for this. 1. I can reach more people. 2. I have a back up version of my blog if something ever happened to Blogger. 3. I wanted to learn how to use WordPress.
Well, from time to time, I get an e-mail saying that I have a comment on the WordPress version of my blog. Sometimes it is spam, sometimes it is a nice note. This time, it was a revelation.
Here is the comment I received from Actorgirl:
“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!”
This is what I wrote in response:
“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”
(You can read the original post here.)
As you can see, I have some definite views on the subject of intersex conditions and how Turners Syndrome is perceived by many people. What angers me is that there are so many people who want to label it a disability. A disability? What has it prevented me from doing in my life, besides reaching things on high shelves and having children the old fashioned way?
1. There are a lot of short people out there who don’t have Turners Syndrome. Are we going to consider everyone who is short disabled?
2. The same thing goes for men and women who are dealing with infertility. There are many, many people who are unable to have children naturally.
I realize that there are a whole host of issues that can arise with Turners Syndrome, but most of the women and girls affected do not have serious physical disabilities (if any). With regards to mental disabilities, aside from very specific learning disabilities related to math and spatial reasoning (which are not always present), the rate of mental disability is comparable to the rest of the population.
Why then do we try to put artificial limitations and labels on individuals because we perceive them as different? I know that it is a human trait, but it has serious consequences. It just goes to show you that a simple comment can make a person angry all over again. I just wish that there was something constructive that I could do about it (aside from correcting misinformation when I see it).
Lindsey
What an amazing comment. So glad she took the time to write that and send it to you.
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.
Cheryl, they ARE antiquated. I literally haven’t met a TS woman who does not have at least a college education. That doesn’t mean everything, but it certainly makes a statement.
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
BEAUTIFULLY written, Lindsey. It IS often the doctors whom I have found to be the least interested, the least concerned. I am glad I finally found the one I have– although she doesn’t have a lot of experience with TS, and actually asked me what my IQ was when I first saw her (LOL!!), she has been the most honest, treated me as a human being, and willing to do what I ask her to do.
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’).
Actorgirl, I used to not tell anyone either, especially when I was growing up. Unfortunately, there were a few instances where people found out, etc. It was not pretty.
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
I’m actually surprised to read this. I feel like a Turner’s Syndrome woman coming out the woodwork, having never spent much time thinking about or feeling affected by it since I stopped taking growth hormone until 10 years later when I married and decided to let myself hope I could have a baby. And was unsuccessful for 3 years, and was just getting ready to start working towards adoption.
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.
amazing. We need more people like you in this world, and less uneducated “professionals” who dont even know what TS is!!!! its outrageous.
I have a baby with Turners. She is a twin and is 1 year old. I know she will have issues in the future, but we will deal with that as it comes. She is a firecracker!
I don’t really know what to say to people who say I have a “special needs” child. She does have Turners, but I don’t feel the need for a label. In my eyes there’s really nothing “wrong” with her, other than she is small.
As far as not being able to have children “naturally,” there was a local woman who gave birth to a baby with Turners, they tested the mother and she had Turners. So, they don’t really “know” as much as they think they do.
I am the mother of a turner’s mosiac dauther who just turned 18. I know all women that have the syndrome are just like everyone esle with any other syndrome or normal people. Everyone has different symptoms of the syndrome etc… All I know is turner’s syndrome is the most confussing mental thing I have ever come upon. Sierra my dauther never had any of the physical problems other than being shorter and having correctonal surgury at 3 mos old on the mosiac part. She started having problems in 5th grade. She was in the gifted and talented class at school and her grades dropped dramatically. luckly she had a great teacher from the previous year to help. I asked the school to have her tested for learning disabilties. The school thought I was nuts! Her IQ amd test scores were off the charts. they offered to help unoffically. I said no that in 2 years unoffically wasn’t going to cut it. Best move I ever made. Sierra shows she does have disability. in processing information. She is so smart But, it takes her longer to process it than everyone esle. Always wondered why on a report she would only give 2 sentences. So she got an IEP. She has little accomitations. But, one big one for her is she can use a computer to do a report and some how with it she can give you more by doing so. she also gets to hand in her homework first thing in the mourning to the teacher’s mailboxes. so she doesn’t have to worry about forgeting to hand them in. she has been known to do homework three times because she forgot she did it already.I don’t know how many of you have trouble driving a car. Sierra went through driving school last summer and failed on the interstate drive she tryed to merge with the semi’s and stopped dead on a green and blew through a red. She does great if someone is in the car helping her think through it. I have fought everyone, lawers docters, school, the judge I think more information should be out there on the syndrome and believe me after all me and my dauther have been though I will be posting everywhere. For every girl with turner’s syndrome or a family or friend with it. I support you and want everyone to know how wonderful everyone one of you are. I thank god everyday for my dauther and thank god everyday for the stuggles we’ve been through that maybe my 1 voice can reach another. Blessings…Nicole
The Turner syndrome is the result of lacking some genes present of the short arm of the X chromosome. The risk factors that predispose persons to develop this syndrome are still unknown.
wow i have t.s. and deal with this all the time im 14 so understand how hard that it and people need to learn more for sure