Saturday, September 04, 2010
Monday, June 08, 2009
Another Amazing Comment on Turners Syndrome
Sometimes A Comment Can Make You Stop and Think « Ramblings of a Misguided Blonde
The above link leads to an amazing discussion on Turners Syndrome and sex. Quite frankly, I had forgotten just how amazing that conversation was. Today I received another eye-opening comment on our conversation.
The comment is as follows:
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 labeled 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.comWhile 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.
A couple of observations: First and foremost, this is exactly why I write about and discuss Turners Syndrome. For so many years I was incredibly ashamed to have it. I felt like a freak, as though no one, no matter how understanding (including my own Mom), could understand what I was going through growing up. Then my parents made the best decision possible. They provided me with the opportunity to go to a camp out in Colorado for girls with Turners Syndrome. For the first time in my life, I felt as though I could honestly discuss some of the issues I was facing. It was simply amazing to finally realize that I was not the only one. Nothing could have been better at ages 14 and 15.
While other girls where thinking about dating, kissing, sex, etc., I was wondering if I would ever be able to have children, and trying to figure out where I fit into the scheme of things. It was very lonely. I had always wanted to eventually be a Mom (I still do), and I had to come to term with my physical limitations.
Second, this comment gives me a lot of hope. I am not such an optimist as to think that I will one day too have my miracle baby, but it is a possibility. This comment just adds to a growing feeling I have that I need to know more about my actual diagnosis and Turners Syndrome in general. For quite some time now I've had this growing suspicion that Turners Syndrome has been used as a blanket term for several related genetic disorders affecting the X chromosome. For example, there are several types of cancer. There indeed may be several different types of Turners Syndrome as yet to be identified. They don't even know if there is a chance as to whether or not it can be inherited or not. There are so many questions out there, and I wish I knew how to go about getting answers.
Much more on this later.
Sunday, January 25, 2009
Does It Get Any Better Than Google?
Personally, I can't wait! I do most things online anyway. I seriously can't wait until this comes out (if it is true). It is amazing how far technology has come, even in the last five years.
Thursday, January 22, 2009
Sometimes A Comment Can Make You Stop and Think
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.
(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).
Thursday, January 15, 2009
File This Under "Why Didn't I Think of That?"
Playing The Beatles Backwards: The Ultimate Countdown | JamsBio Magazine
Wednesday, January 14, 2009
Contrary to Popular Belief; No, I Never Flashed Bob Schneider!
It is funny how you forget certain things, even regarding very important times in your life. After talking to my pal Cheryl last night (Cheryl is one of my best buds from Austin, Texas), she brought up a cruel joke that we played on our friend Andy (excuse me, Andrew).
Back in 2002, Cheryl, Andrew, and I attended the First Annual Austin City Limits Festival. A wonderful hot summer weekend under the Texas sun listening to great music with great friends. At one point, Cheryl lost her cell phone. As the three of us split up looking for it, somehow Andrew and Cheryl were convinced that they saw me near the stage, if not on it. Cheryl and I were then alone for a minute, and we decided that we were going to play a little trick on Andrew.
You see, Bob Schneider, a famous Austin musician who not only has a solo career, but fronts several great bands, was on stage. I had only recently become acquainted with Bob and his bands thanks to my roommate Karen. Bob's set at ACL Fest was one of the acts that I did not want to miss.
It was conceivable that Andrew and Cheryl thought that I had worked my way up to the stage. Cheryl's idea was this (and yes Cheryl, it was YOUR idea): Hey, let's tell Andy that you flashed Bob Schneider. So, we did. I have never in my life flashed anyone (except maybe my boyfriend Brian). Up until 2006 when Cheryl broke the news to Andrew, he was convinced that he had corrupted me all those years ago.
The sad thing is that I forgot all about this, and I am not even 30 yet! What am I going to remember about my days in Austin when I am 80? I am just glad that Cheryl reminded me, and that we were able to pull one over on a very smart guy for so long. I will never ever forget how much fun I had in those few short months of hanging out with Cheryl and Andrew. And yes, I still listen to Bob Schneider's solo work from time to time.