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.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.

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.

Lindsey

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.

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

My Definitive Sarah Palin Post

This particular piece has been in the works for nearly two weeks, but like the rest of the country, the selection of Sarah Palin, Governor of Alaska, as John McCain's running mate blew me away. It is fair to say that people on both the right and left were shocked. While I was shocked, I was also ecstatic. For the first time in my life, there may be someone a heartbeat away from the Presidency with whom I can identify. There has never been a truly viable national female conservative candidate in the United States (Lizzy Dole never had a chance). Period. I now have a political role model for the first time in my life.

While I claim that Sarah Palin is a role model in my eyes, let me be clear. I don't agree with her on everything, but I never expected to either. Take abortion, for example. I am not nearly as staunchly right to life as Palin (I believe that ultimately a woman - in fact, all people - should have control over her own body). However, I could never make the decision to have an abortion. In almost all cases, I believe that adoption is the best answer to unwanted pregnancies. That said, I've never had much of a stomach for some of the antics of the right to life movement.

Then came Sarah Palin, who is very much pro-life. How can you look at her baby Trig and not see the unconditional love created by his life? It is real. There are many, many people all across the United States who can identify with making the decision that Sarah Palin made to have Trig, despite the challenges of Down Syndrome.

Before I go further, I need to clarify something. You see, technically I'm a "special needs" person myself due to the fact that I have Turners Syndrome. Fortunately for me, I grew up in an era where such terms as "special needs" weren't used, and to look at me, you wouldn't suspect that I have a genetic disorder (I'm just shorter than average).

All of that aside, I attended national Turners Syndrome conferences in 1999 and 2000. I attended to meet up with an old friend of mine, Brenna, who also happens to have Turners Syndrome. Quite simply, my experiences at the conferences changed the way I view pregnancy, motherhood, adoption, and myself. Unfortunately, much of the conferences involved a lot of parental hand-holding. Parents of girls with Turners Syndrome want more information about their daughters' condition. It is all well-meaning, but it also can lead to a certain over-protection of women and girls with Turners Syndrome. In some cases, I almost wonder if Turners Syndrome isn't worse for the parents than it for the women and girls who actually have it.

It was against this backdrop that I happened to meet a couple who were expecting a little girl with Turners Syndrome. That's right; Turners Syndrome, along with genetic abnormalities such as Down Syndrome, can now be diagnosed in the womb through amniocentesis. I can only imagine what the couple was going through.

Imagine that you are a pregnant woman whose unborn child was just diagnosed in the womb with a serious genetic condition such as Turners Syndrome. The doctor may provide you with the worst case scenario (serious heart and kidney abnormalities), little or no information, or worst of all, outdated information. You read, hear, and expect the absolute worst. You realize that your child will face physical and emotional challenges. She will most assuredly be short and infertile. Outdated information will say that women and girls with Turners Syndrome show signs of mental retardation (this has been disproven and literally all of the older Turner Syndrome women I've met have at least a bachelors degree). In essence, a lot of rational, well-meaning people would understand if you decided to have an abortion. It has most certainly happened and will continue to happen.

In fact, I have to give the couples that I met at the conferences a lot of credit. They took the time to put a human face with the condition. They got to meet women and girls with Turners Syndrome, many of whom lead surprisingly ordinary lives. They got to see the achievements, the challenges, the adoptions, the successful outcomes of in vitro fertilization, etc. I will never forget the speech that one expectant mom of a little girl with Turners Syndrome gave before the entire conference. She simply stood up and thanked everyone. She had been considering abortion, but decided to learn more. She was overwhelmed by the experience of actually meeting those with the same condition that inflicted her unborn daughter.

It is quite simple. Sarah Palin's candidacy has brought that all back for me. She has lived with and through the life altering decisions faced by moms with "special needs" kids, especially those whose children are diagnosed in the womb. In a broad sense, these were my first impressions of her - an authentic human being who shares many of my values and who has been tested by life in a variety of ways. She has stuck by her convictions.

Then, almost as soon as the announcement was made, the attacks began. I've never witnessed anything so destructive in my entire life. The rumors regarding Trig, Bristol, and Sarah were largely put to rest after the announcement was made that Bristol is pregnant (the most vicious of rumors would have been biologically impossible). Bristol's pregnancy is a whole other topic in and of itself (it is very telling of how we view sex in the United States), and I do want to discuss it in another post. However, rumor after rumor came spewing from a dinosaur mainstream media that would never treat a women on the left the same way. As a woman who grew up in a small town and who shares many of the same values as Sarah Palin, I have no choice but to assume that the mainstream media would treat me with the same disdain and disrespect (in fact, contempt). In fact, there are probably people on the left who probably think that my life isn't worth living. I happen to know for a fact that some conservative men don't even get why women like me would feel this way (again, another post). It is brutally ugly and says a lot about our society.

You can bet that you will hear a lot more from me as election day draws near.

Lindsey

More Extended Silence

I apologize for getting on such a tangent the other day. Sometimes you need to just get things out in the open, and that is what happened the other day. I can't thank those who commented on the entry enough.

One male commentator asked whether or not I've considered adoption. Quite frankly, I've spent the last 18 years weighing the pros and cons of in vitro fertilization and adoption. I've known about my infertility since I was nine years old (my parents were pretty much backed into a situation where they had to tell me what was going on). Even though I'm a proud supporter of adoption, it doesn't really change the situation.

There are a couple of things that need to get out in the open. First and foremost, my Mom spent years telling me that I really shouldn't worry about it much. By the time I was ready to have kids, the technology would catch up. In a sense, she was right. Physically, there is nothing preventing me from going through in vitro fertilization. That said, the more I learned about it, the more I thought about the implications, the more I researched it, the less appealing it became. I've read personal accounts of women who have successfully and unsuccessfully gone through the process.

There is no guarantee that it will work on the first try or even the hundredth. In addition, I'm in a position where I would need a donor egg (I do not have ovaries due to Turners Syndrome, hence the issue of infertility). I've thought about it long and hard. At one time, I considered asking my sister to be the egg donor, but how do you ask someone something like that? Then, I truly sat down and thought about what that meant. I would have a child that was genetically my sister's and my husband's (Brian's). It would be way too weird. That said, I've learned that some Moms of girls with Turners Syndrome are seeking to gain permission to freeze their eggs for eventual use by their daughters. I see nothing wrong with it. It is a loving gesture from a Mother to a daughter, although it would be way too creepy for me to consider if it was an option. Even with an unrelated egg donor, it would be strange to think of the child as genetically the product of my husband and some random woman.

As many issues as there are with in vitro fertilization, it was the emotional roller coaster described by women who have had the procedure, successful or unsuccessful, that really did me in. I'm the first to admit that I don't think that I could handle it. I don't know how I could get through the devastation of having to go through the procedure two or three times and still face the probability that I may never get pregnant. I don't want to put myself or my family through that.

You may be asking yourself why I'm concerned at all as it seems clear that adoption in the obvious choice for me. In a sense, adoption is the obvious choice, and I have no real qualms about it. I grew up around adoption, and I don't believe that there is less of a bond there. That said, as selfish as this sounds, I want to experience being pregnant. I really do, as stupid as that sounds. I mean, who wants to willingly go through the process of gaining lots of weight, having mood swings and cravings, only to later experience lots of intense pain? Well, millions of women do it every year. Life is precious (although we are rapidly losing sight of that in the current word), and what could be greater than creating new life? That's what bothers me. I want to experience a new life growing inside of me. It really is as simple and as complicated as that.

There is an old episode of "Roseanne" where the men pretend that they are upset that they can't have babies. It was funny, but far from the truth. The way I look at it, men get to be a part of the process once they become fathers. No matter how far the Far Left goes in trying to make men obsolete, they are still very much needed as part of the process. This may be politically incorrect now, but they are needed in the entire process of raising children.

So where does that leave people like me? From time to time, I do feel left out. One day, I imagine that Brian and I will adopt. It will probably help me deal with all of these issues. That said, I'll always wonder what it is like to be pregnant.

Lindsey

Extended Silence

Things have been rough lately, but I have resolved quite a few issues in my life. Sometimes I wonder how things could have ever gotten so screwed up in the first place. Once it is all over, I plan to write several blog posts regarding what I've been through the last few years.

Most people don't realize it, but Mother's Day is extremely difficult for me. Sometimes I don't know how I'll ever "get over" my infertility. It hurts. Over all, I am fortunate to have such a wonderful Mother and a two loving Grandmothers still in my life. I don't know what I'll do when they're gone. That said, having those strong women in my life almost makes things worse. I want to one day be a role model like them, but how will I ever get a chance? My Grandma recently tried to explain to me how wonderful it is to have grandchildren. It just made me want to cry to realize that I'll never have that experience. I've always been told "just wait until you have children someday." Why didn't anyone stop and think that that is probably out of the picture for me?

For whatever reason, I've been thinking a lot about two particular TV series finales lately. Both the series finales of "Roseanne" and "Six Feet Under" left viewers with much to think about. Both dealt with issues of life and death, purpose, and family relationships. I just finished watching the "Six Feet Under" finally again. It drives right to the heart of what has been bothering me, plaguing me even, over the last three or four years. What is my purpose here?

Seriously. Why was I put here on this Earth if I am unable to have children? That simple question has haunted me ever since I found out I have Turner Syndrome. I'm now watching the people I grew up with start careers, get married, and have babies. I have none of that yet at 27. It hurts deeply, much more that I would ever care to admit. My little sister is getting married this fall, and how long will it be before she is pregnant? I'll be ecstatic for her, of course. However, I'll also be a little sad. She and her family will live on the other side of the state. I won't be able to dote on my nieces and nephews.

Believe it or not, I am convinced that my career difficulties (to say the least) are tied to the fact that I will never have children. When you are trying to substitute a career for having children, you are bound to be bitterly disappointed. Nothing has enough meaning. As a result, you quickly begin to be apathetic. I long for something meaningful in my life (in addition to my family relationships and my relationship with Brian), but I've been unsuccessful. I'm severely disillusioned.

Thank you for putting up with my little rant. I deal with these issues every single day, and it is hard for me to articulate just how deeply they hurt. I hope to resume normal blogging soon.

Lindsey

Weight Issues and High School... Sigh.

I spent a chunk of this evening watching a TV movie, which is extremely rare for me. Normally I watch certain reruns of old sitcoms with Brian, and that is about it. Well, this movie really struck a chord with me. You see, I was the "fat" girl in high school (elementary school and junior high too). The incredibly sad part of it is that I wasn't nearly as big as I am now (more on that later), and I doubt that I would have been that big in high school if I hadn't listened to my classmates when I was a small child. It is sad how if you hear something long enough about yourself, you tend to start to believe it, no matter how strong you are. Some may disagree with that statement, but I stand by it. How it is possible to hear someone say something about you day after day and not begin to believe it, especially when you are a small child (five to ten)?

Before I go any further, i want to provide a little bit of background. When I entered kindergarten in 1986, my biggest concerns were spending time with my Dad (I loved going to watch him play basketball and men's softball), learning (I loved being read to by my Mom, and by all accounts, I loved my two years of preschool), and playing with my little sister (who would have been two at the time). I don't remember ever thinking about my appearance or popularity. Quite frankly, I spent much more time with adults as a small child than I did with other kids. My family lived out in the country; my sister was my primary playmate and friend. Most of my interaction with other kids outside of school took place in very structured settings such as sporting events, summers spent with my parents and grandparents at the canoe livery (my parents' business), or family gatherings (I adored my older cousins). It is safe to say that I wasn't prepared to be compared to others on the basis of my physical characteristics.

I don't really remember if I was picked on about my height and weight during kindergarten, but I do remember being teased from first grade on. My teacher, Mrs. Balton, told me "good things come in small packages" (I clearly remember her telling me that as I was about to leave for Easter vacation, a trip to Walt Disney World). It is a very nice thing to say to a small first grader, but it isn't exactly ammunition against certain kids who insisted that my entire physical being was just wrong.

As I grew older, the issues grew. I was constantly being teased about my height and weight on a daily basis. I'm tempted to write some of what kids said to me here as I still remember them nearly twenty years later, but that would just give them legitimacy. Things became so ugly that I changed elementary schools. It wasn't the only factor in changing schools, but it was one. Of course, it didn't resolve the issue. In some ways, as the rest of the class approached puberty (remember, I have Turner Syndrome, so my "puberty" was carefully planned out by doctors without any input from me), things became worse. The height difference grew and I gained weight as I began to believe what those kids were telling me.

Well, as so often happens, I began to find my niche during the later half of high school. By then, I was content to focus on academics and bide my time until college (and yes Mr. M, it was well worth the wait). My weight stabilized and I even began to exercise regularly for lengths of time thanks to a very understanding gym teacher (he was a great guy, and it is too bad that there aren't more like him). Again, I was biding my time. One of the few incidents of all out hatred towards me came one day as I was walking out of the women's locker room, heading to another class. For whatever reason, this girl (I don't even remember who she was) shoved me head long into a cement wall. My head was about an inch from hitting the cement wall. Well, karma is a b*tch. This occurred all outside the office of the female physical education teacher's office. Guess who happened to be right in her office? Well, the girl who shoved me from behind, unprovoked, ended up getting hauled off to the office.

As painful as some of those memories were, I truly felt as though I left it all behind when I went to college, and in many respects, I did. My senior year I lost quite a bit of weight and actually came within 15 to 20 lbs. of actually being my "ideal" weight. Well, due to career issues, moving, and financial issues, I gained it all back and then some over these last four years. I'm not talking about merely gaining an additional 20 lbs. on top of what I weighed back in high school. No. I'm talking about gaining 80 lbs. or more in those four years after college (for those who know me and haven't seen me in a while, it doesn't look as though I gained 80 lbs., but it is certainly noticeable).

I'm now much larger than I've ever been in my entire life. It is a lack of exercise and poor food choices. Intellectually, I know all of that. Emotionally, food is a comfort to me. It is sick, I know. I know that I need to do something about it, but right now, I find it difficult to care very much. You see, I'm in the midst of dealing with feelings of rejection all over again now that I'm out of college. I've been unemployed for over two years (I briefly worked for a cemetery last year), and it brings up the feelings of rejection all over again.

I keep wondering exactly what is wrong with me and why good job opportunities keep slipping through my fingers, but I keep placing that blame on myself. A lot of the career issues are related to the fact that I want to live in Mid-Michigan and the fact that my background in supply chain management and Spanish isn't in demand right now here. Professional manufacturing is losing so much ground here, it is truly tragic. Yet, I place all of the blame on myself. I'd love to move, but that would mean that I'd lose the wonderful relationship I have with my fiance, whose career here is going well. I know that my background is demand elsewhere, but I've already left Brian for a job once. I simply can't do it again. I want a life with him, here in Bay City. In fact, I'm close to achieving my childhood dream of settling here in Bay City. I just need a job.

Unfortunately, all of this - the job, the weight situation - has strained my relationships with my family somewhat. My Mom, my Dad, and my Grandma Reid (with whom I'm very close) are all extremely concerned about my weight. My parents didn't say much, at first, but other things have occurred recently that really hit home as to how they really feel. My Grandma Reid (again, remember that I love her dearly and that we're close) has brought it up nearly every time I've met with her since I returned from Texas during the summer of 2005. It got to the point where I had to tell her how it made me feel. She honestly thought that bringing it to my attention would help me.

This is where I get angry. Believe it or not, there may be people out there who actually think that discussing a weight issue will help the person who has it deal with it. As well meaning as my Grandma was, it deeply hurt me. I can certainly see the issue for myself, and the last thing I need is a reminder of it. I made the point with her, and she's been great about it since. That said, I don't think that people who have never struggled with their weight could ever understand the stigma that weight has in this society. It closes all kinds of doors, and it is still acceptable to discriminate on the basis of weight and height. That, in a nutshell, was the entire point of the movie. The movie made it very well. I wanted to share my experiences not to point out how cruel kids can be (that's be demonstrated time and time again), but to ensure people that everyone has their issues. There are several stories I could have included here regarding how I was treated by classmates. I didn't though. They were going through their own issues.

There is always someone who has it worse than you. Everyone has some mountain to climb. Our world would be a much better place if we all remembered that.

Queen Sized | myLifetime.com

Lindsey

PS - The picture included in my profile is my first grade school picture.

Nextbook Interview with Sarah Horowitz

Over the last few weeks, I've been fascinated by what I've learned about Sarah Horowitz. You can read what I've written here. While I just learned of her existence, and unfortunately, her death, I've already learned much from the example she set. She and I would have been at complete opposite sides of the political spectrum, as she was with her famous father, David Horowitz (much more on him later), but I can't help but think of how much we could have learned from each other. Fortunately, we all have her example to learn from now. It is just too sad that her life ended so soon.

Nextbook: Vision of Unity

Lindsey Russell

On A Personal Note... The Profile of a Writer Series and Much More

Many readers may have noticed the change in tone of this blog over the last few weeks. There is no doubt that it has become more political and less about the art of writing. As a result, the Profile of a Writer feature has been put on hold for now.

While I do hope to highlight other authors soon, as well as conduct interviews with a few of my favorites, I'm not sure exactly when that will be. At this point, I'm truly concerned about the state of Michigan, as well as the country. As a result, I'm slowly finding my voice in the political sphere. In addition, I finding it easier and easier to write about Turner Syndrome and other gender issues. As much as I don't like to admit it, Turner Syndrome affects me in a profoundly personal way each and every day. It is a part of who I am as a woman. There is little out there with regards to writing for Turner Syndrome girls and women written by women and girls who have Turner Syndrome. There may be a lot of information on the clinical features, but there is little regarding what it is actually like to live with the disorder. As a result, I feel as though I'm fulfilling a need.

There are so many issues to discuss and so little time. Please know that even though you may disagree with my viewpoint, my perspectives on world events, politics, gender issues, Turner Syndrome, and more are shared with the utmost conviction. In other words, when I share my perspective with readers, it is almost always due to the fact that I have very definite thoughts and/or beliefs on the subject matter.

Now that I have all of that out of the way, I also want to state that I do want (and need) to have fun with this blog! There are good things happening in the world, and they need to be acknowledged.

Lindsey

Sarah Horowitz

I recently learned about Sarah Horowitz as a result of a blog called The Other McCain by Stacy McCain (you can read what he wrote regarding Sarah Horowitz, Turner Syndrome, and abortion here). It is one of the most compelling pieces I've come across regarding a specialized topic I'm passionate about, Turner Syndrome and abortion. It was this particular article that led me to one of the most moving eulogies I've ever read (please click on the link below).

Coincidentally, I've read some of David Horowitz's work over the last few months, but I was not aware that he lost his daughter Sarah recently (March) or that Sarah had Turner Syndrome. As you can gather from Stacy McCain's post, as well as David Horowitz's profoundly moving eulogy of his daughter, Sarah was a woman of uncommon strength and personal conviction, even if it put her at odds with her Father at times. The lessons outlined in both pieces are timeless and are needed now more than ever. I will be writing much more on Sarah Horowitz in the near future.

FrontPage Magazine - Remembering Sarah by David Horowitz

The Other McCain: 'The dignity of living'

Lindsey Russell

Turner Syndrome and Abortion

I came across this blog the other evening, and I couldn't believe my luck! Here was a conservative male blogger discussing Turner Syndrome. Not only was he discussing Turner Syndrome, he discussed some of the reasons why any discussion of Turner Syndrome and abortion together makes me sick. Yes, there are people out there who would consider it best to abort a fetus diagnosed prenatally with Turner Syndrome. This is exactly why more accurate information on Turner Syndrome, and other genetic disorders like it, needs to be common knowledge. I've met quite a few girls and women with Turner Syndrome in my life, and I have yet to met one who didn't have something wonderful to offer the world. You can bet that I'll be keeping up with this blog.

The Other McCain: 'The dignity of living'

Lindsey

Turner Syndrome and Sex

Before I get started, let me clarify that this post is about gender rather than sexual intercourse. I apologize if I disappointed anyone. I discovered some fascinating information regarding Turner Syndrome the other day. This may seem strange, but even though I have Turner Syndrome myself, I did not know that it is considered an intersexed condition. It came as a complete surprise.

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.

Trans and intersex - a forced marriage of inconvenience? « you know that I’ve been drunk a thousand times

Lindsey

The Voice of a Young Girl with Turner Syndrome

I happened across the blog and website of a 12 year-old girl with Turner Syndrome. It took me back to my childhood. There are some things that she has written that appear to be taken directly from my personal journals from that time (you know, what writers had before the Internet). It was really refreshing to be reminded of how far I've come, how much I've grown in 15 years. It is certainly to be expected, but when it hits you in the face, you have to sit back in wonder!

Anyway, she is quite a poised young lady for 12. You can find her links below. She has a promising future as a writer and web designer!

Colleen's Turner Syndrome Page
Colleen's Blog

What Exactly Constitutes a Disability?

Curly over at Curly's Corner Shop, the Blog! has yet another piece that really grabbed my attention. Those readers who have checked out my Turner Syndrome Forum know my thoughts on the abortion debate. Curly's latest blog entry, which is here, addressed the topic of abortion due to diagnosed disabilities in the womb. I've heard that some pregnant women, upon receiving the diagnosis of Turner Syndrome for their daughters, are reminded that they have the option to abort. On a personal level, it sickens me.

One can only hope that the world is spared the horrors of routine abortion of fetuses with disabilities. Humanity went down a similar road once not too long ago, and we do not need to go there again. This is exactly why history, the arts and humanities, and ethics are so vitally important to education.

Lindsey

Do We Go Too Far?

For those who don't know, I have Turner Syndrome. While I won't get into the details of it here, it has brought one larger issue to the forefront of my life. You see, from the time I was ten until I was 14, I took daily growth hormone injections. While I understand why my parents made the decision to have me go through this (they simply wanted what they thought was best for me), I personally don' t agree with treating short stature as a disease.

I've actually been planning a post on this topic for quite some time, but there always seemed to be too much that I wanted to say on the subject. First off, with regards to the injections, there is no way to know if they truly helped me grow or not. I might have grown to my current five feet on my own, then again, I may not have. Second, does it really matter? Would I have been any less of a person if my final height had been under five foot? I know it might seem silly to suggest this, but then again, isn't that the message the medical field is sending when prescribing several years of daily injections for a few inches of growth?

I'm tired. I'm tired of being treated like a medical curiosity when, in reality, what I have is simply a genetic disorder that randomly occurs in one out of 2,500 live female births. It shouldn't be such a mystery (and there are still a lot of misconceptions). There have always been women with Turner Syndrome and there always will be as long as there is a Human Race. We've come a long way in becoming more tolerant of other ethnicities, races, life styles, religions, customs, etc. In some respects, we've come a very long way; in others, we may have gone too far. That aside, I don't think that anyone will argue that we've made any real progress in accepting physical variations other than the color of one's skin. It is still socially acceptable to discriminate on the basis of height , weight, physical deformities, etc (it just isn't as apparent). It is one area in which acceptance and understanding can go a long way. The article below makes a very valid point: we need to work on changing the social stigma of short stature, etc. It is only then that we can get away from trying to make everyone "normal."

Can you imagine how boring life would be if we were all alike? Personally, I'm glad that I'm different. I'm glad that I'm not a cookie-cutter Barbie doll! Everyone has a challenge in their life; everyone has a personal struggle. Just remember that next time you are tempted to judge someone before he or she opens their mouth.

Essay: When Medicine Goes Too Far in the Pursuit of Normality

Lindsey

PS - Brian, if you ever read this, I want you to know that I wrote this in part for you. I know all too well what your feelings are on the subject!