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Turner's Syndrome and Me

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I was three years old. My doctor had been following my growth, eating, and more. He was worried. My parents, Christine and Christopher, also were worried. The doctor had done some tests on me, and found I had Turner’s Syndrome, a chromosomal disorder affecting females in which all or part of one of the X chromosomes is absent.


*In my story, you’ll find what it’s like to live with Turner’s syndrome. I’ll take you to when I was newly diagnosed, to how I live now. Please enjoy reading!






For my family, friends and doctors--you guys rock!!



DIAGNOSED


I was three years old the day my mother found out from the doctor. My mom got off the phone, and was crying. My father had to fly home from a trip he was on. I, being three years old, didn’t know a thing! I remember my mother telling me years later, “You were so little. You came up to me and said ‘Don’t cry, mama, don’t cry!’ ”


For the next few weeks after that day, it was all doctors’ appointments. Some of which I were afraid, you know, being so young. Endocrinology at Hartford Children’s Hospital was the most common. My endocrinologist, Dr. Karen Rubin, just happened to be one of the doctors I liked! We were trying to find out as much as we could about my new diagnosis.


My doctor had prescribed daily injections of Growth Hormone shots. They were going to help my growth speed up a little! This started when I was only four years old, one year after I was diagnosed. I disliked these shots so much! I was put on a lot of other medicines too, over time. I had ear problems, so I had to have nine sets of tubes in my ears, from my ENT!


Well, this is all the first years of Turner’s. There’s more!




LIVING WITH TURNER'S (THEN)





Living with Turner’s then was tough! I didn’t know what was going on most of the time. Sometimes I could tell that my parents didn’t understand what was going on. People who we ended up telling about my situation didn’t know what we were talking about.




My mother was always on the Turner’s syndrome Society website, talking to other women, finding other Turner’s girls. This was difficult for me, really, I was six or seven years old then and wasn’t sure I was ready to tell others. The doctors told my mom that this would change when I got older. Both my parents felt that it was important to find out more, and meet other families affected by Turner’s.




By this time, I had known I had Turner’s. I just didn’t know as much about the syndrome as my parents did. Having TS did affect me in my life, just not as much as it does now. I asked myself questions, like why do I have this, and is there more to know? As I said, I wasn’t exactly ready to tell others about me at this age, as I was afraid about what they might say. After all, I was, and still am, a pretty short person!



I had issues in school with Turner’s, too. Every time I came back from a visit in Hartford, I was afraid that teachers would ask me how it was. I was still very young, how much should I know? For my other issues, like hearing, the school had to make sure the teacher always wore a microphone, so I could hear well. This embarrassed me a little; it made me feel like I was the only one in the class that had something wrong! Math was, and still is, the hardest subject for me. I would need extra help during the day, and more! After a while, this did change. You’ll see!



Turner’s Syndrome wasn’t a very well known condition, back when I was 1st diagnosed, as I already said. You can see how hard it was to live with it, right? It was difficult for me, but I pulled through. For all of the TS girls out there, I know you can too! For all the mothers with newly diagnosed babies, don’t worry about anything! I’m sure she’ll be fine!


As I already stated, living with Turner’s then was pretty hard for me, and my parents. As I came to know that I had TS, it was even harder! I never knew what to expect. I was always afraid and shy about everything. The doctor’s visits then were also hard! I can’t tell you how much going to the doctor’s office every so often freaked me out! This was all Turner’s back then, for me.

LIVING WITH TURNER'S (NOW)


Now that you’ve heard about my Turner’s then, I’ll tell you about my Turner’s now! As I write this, I’m a healthy thirteen year old eighth grade student! A lot has changed for me since then. My doctor’s appointments are easier, and I’m almost done with taking the shots for growth hormone!


Now I’m the one who’s on the Turner’s syndrome Society website looking for moms and other TS girls that need help (for the girls I know with TS reading this, thank you so much)! When I do that, it’s such a big help to me! Being an older girl with TS, I understand more about it now.


I am happy that I was able to live with TS then, but there are a couple of drawbacks to it. Don’t worry, they aren’t that bad. One thing I’ve come to realize is that I cannot have children, naturally, of course. There are a couple of options for it, though. One thing is getting an egg donor. This can help any TS woman who wants to be able to have a baby naturally. But, with this, there can still be a miscarriage. Another thing TS girls can do to have a baby is an adoption! This process does take long, but we can still have our child, right?


One thing I mentioned is how much easier the doctor’s appointments have gotten. I was always afraid when I was little, but now I’m not. I like to learn more about TS when I visit my endocrinologist. If I learn more about it, I can understand it even more! That’s the best thing about it! You’ll feel less stressed out and scared that way! That’s my life right now. I’m sure it’ll change, though!


My Letter to All TS Girls!

Dear TS Girls,


I hope my little story has helped you! Writing this was a great thing for me, because I know I’m reaching out to all of you who need the help! If you’re newly diagnosed reading this, don’t worry! As I said in my story, talking to your endocrinologist helps a lot!



My website, www.freewebs.com/colleenjoyce can help, too! Sign the guestbook while you’re there! I’d love to hear from you all! I’d be VERY happy to help, you all know that! I didn’t just write this for me!


Colleen J.



Join the Discussion

This article has 7 comments. Post your own now!

ClarinetPower said...
Jun. 26, 2012 at 7:52 pm
Very insightful story, but has a choppy writing style. please keep writing!
 
Justinemelrose said...
Aug. 22, 2011 at 6:12 am
Hi i was really interested in your story, my ten year old daughter has just been diagnosed, we are waiting to start the injections and she has not told her friends at school, she wants to do a presentation at school about it, she has not found anyone in our area with Turners yet and we are still reading up on it. She loves drama and has done alot on television and at the Edinburgh fringe, her main concern is that its going to affect this and stop her from doing it. I will let her read your story... (more »)
 
katie-cat said...
Feb. 4, 2011 at 3:53 pm
This was a very well-composed report.  It kept and held my attention.  The only thing was, I'm not really sure what Turner's Syndrome is.  The only thing you said was that it's a chromosomial disorder.  So, for the actual writing of your piece I think you should put more info on that.  (Unless that's to personal for you, in which case that's totally cool.)  Your story was very inspiring, and inspiring to anybody struggling with something, not just TS.
 
Panda500 said...
Oct. 7, 2010 at 6:08 pm
wow thats a bummer but outstanding story
 
lori 03 said...
Sept. 15, 2010 at 8:30 pm
I am so thankful my daughter has someone that lives so close to us and someone as wonderful as yourself to talk to as she grows up, she is so lucky and so am I, you, your family and your mom are our angels, even though we dont see u often, we always know your there for us, as we are for you:)  I hope Kate follows your footsteps in being there for other girls as I know u will be there for her:) xoxo
 
momof 3 said...
Oct. 28, 2009 at 4:12 pm
Thanks so much for sharing. My oldest daughter was diagnosed with TS when she was 11 and is 13 now. I'm going to have her come and read your articles. They are great.
 
thepreechyteenager said...
Oct. 20, 2009 at 6:30 pm
nice, i liked ur article, it was nice, inpiring, even. no i don't have TS, but i still really enjoyed reading what u wrote
 
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