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The life and times of a single X chromosome

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August 12th, 2006

06:45 pm - A little help with an assignment?
Thanks so much to everyone who filled out my survey!!! I really appreciate it!

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August 7th, 2006

10:01 pm - Becoming a Parent/Adoption
This evening, my partner and I googled "adoption in Canada" and started reading up on how to go about the process, even though that part of my life won't be for a few years yet. (I'm a 22 year-old financially unstable university student).

I was diagnosed at birth, and have always known that I wouldn't be able to conceive. I've been pretty ok with that reality, but as I'm getting older and settling into a life partnership, I'm having to begin really investigating the logistics of having children. It was quite the moment to sit down with my partner and look into all of this.

I'd love to hear about you lovely ladies' experiences with adoption.. Struggles? Challenges? I don't expect the process to be easy..

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August 2nd, 2006

02:17 pm
hey everyone!! My name's Sarah. I'm 17 years old and just started my estrogen replacement. I'm on this patch called Vilelle or something like that. It's going alright, although I'm more moody than normal. But other than that I've just been diagnosed, like a week after my 17th birthday. I have two doctors who work together really, Dr. Eugester and Dr. Nabhan. They're awesome! They're at Riley's Hospital for Children down in Indianpolis. Well, thats all I gotta say!
Current Location: Demotte Library
Current Mood: okayokay
Current Music: None @ The Moment

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May 16th, 2006

10:20 pm - Announcing... A New Website and Forum!
Announcing a new website and forum specifically designed for women with TS!

TS Corner was specifically designed by my friend Julie-Beth and I as a place for young women with TS.
The site includes an extensive forum, a personal blog, a Q and A blog, as well as a blog offering the latest in TS news, research, and resources.

Please note, it is not our intent to take away from other resources out there; we are simply trying to add to the wealth of information already out there!

We are welcoming EVERYONE with an interest in TS and we encourage contributions via debate, feedback, etc.  In essence, we created the site for YOU!

So please, just take a minute and check it out!


Current Mood: ecstaticecstatic

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April 19th, 2006

09:56 pm - Hiya all
Long time, no post!

Just thought I'd post a little about this here (although those of you on my flist will have read about this already in my personal journal). Basically I've been having HRT problems. Through a study I've been taking part in, I've been put on a higher dose HRT to see if that offers better overall health benefits. I've been put on oestrogen patches with progesterone tablets cycled in. The doses have been almost twice as high as would usually be prescribed although this has meant my hormone levels have been at the level that would be considered normal.

The drawback to this is that I've put on a stone (14lbs) in weight since I started it 6 months ago despite having a small increase in my exercise and starting to eat a slightly healthier diet. On top of that I've been kind of emotionally unstable at times, usually around the progesterone part of the cycle (although that has calmed down a bit in the last couple of months but I'm still not quite my usual self) and my performance at work has definitely suffered. It could be just a period of adjustment while my body gets used to it but it's been going on too long for my liking.

All this has got me thinking back to when I first started HRT when I was at high school and from what I remember I did have a small dip in my grades back then too (although it certainly wasn't anything like what has been happening recently). Out of curiosity, has anyone else had similar experiences or is it just me? *LOL* I've also been wondering about the alternatives to HRT - does anyone have have any thoughts on those?
Current Mood: okayokay
Current Music: "Do or Die" - MiG Ayesa

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March 3rd, 2006

12:02 am - Is the group DEAD?
Just wondering if there is any life out there...

I'd really like to keep in touch with some other women in their 20s/30s who have TS...

What's going on people?

More later...


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February 25th, 2006

01:24 am - Camp
I was just wondering if anyone else went to a camp for teen girls with TS out in Colorado... I went two consecutive years and it was one of the greatest experiences of my life.

While they used to hold it on a ranch in the Rockies, they now hold it on the University of Colorado campus...

Just curious if there are any fellow campers out there.



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February 22nd, 2006

02:12 pm - Hormone Replacement
I took myself off of all the hormones I was taking close to a year and a half ago... I was really tired of how they were making me feel and wanted to experiment a little... Honestly, I would have to say that it has worked really well for me. I've felt more level-headed now than I ever did before and nothing physically has changed (I've gained A LOT of weight, but I believe it was due to all of the stress in my life; a least now I've leveled off the weight gain. Now I just need to lose it.).

Has anyone else had a similar experience? I fully understand why girls with TS are put on hormones before and during puberty, but why is it necessary after sexual development has occured?

I have to admit, all of the controversy over HRT has really made me wonder why it is needed.

Any insight? Please share.


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11:47 am - Hi!

My name's Emma, I'm 23, from Brisbane (in Australia).

I don't have Turners Syndrome myself, however my younger sister (almost 19) has Noonans Syndrome, which I believe to be very similar. Was just wondering if anyone here knew much about it. My knowledge of it is very limited, all I know is that it has been narrowed down to a certain chromosome pair and it can be hereditary. I believe my mother and grandmother had some testing when my sister was born and they found out that they were carriers of this defective gene or something, but did not necessarily end up with the syndrome themselves. (I could of course be misinformed.)

Yesterday my sister spent the entire day in hospital having tests, and she's been told she absolutely has to have open heart surgery in the next year. She has a hole in her heart, and narrowing of the pulmonary artery. This seems like a big deal to me (the open heart surgery, that is) - is there anyone on here that can tell me more about what to expect? I don't know much about heart surgery, she's had a few catherter procedures done to widen her pulmonary artery - does anyone have anything to share about similar operation experiences? Is open heart surgery really risky or has it become any every day procedure, will she be likely to stay in hospital for a long time, anything like that?

I'm a bit worried, she's only a very young (and tiny!) 19, natural big sister instincts I guess!
Current Mood: worriedworried

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February 21st, 2006

04:16 am - Absolutely Amazing...
I am amazed that I found a community fully devoted to Turners Syndrome!
At 25, I have known about my TS diagnosis since I was 9 years old (though diagnosed at 3)...

Every time I feel as though I've dealt with the reality that I will never conceive naturally, it hits me again and I am back to square one. Now that I am engaged and deeply in love, it seems as though the whole issue has been brought to the forefront once again...

I am just glad that I've found a way to meet lots of other girls and women with TS.

More later...


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