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Important Question - The life and times of a single X chromosome

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November 30th, 2006

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03:44 pm - Important Question
So, in my acting class I am creating a play about the camp I used to go to for TS girls. After TONS of explaining and educating, I finally have my actors really talking like they have TS. Today in rehearsal they even branched out and asked questions I hadn't taught them! I need help, because a question arose that I could not properly answer.

I was diagnosed at birth, so I don't know what life without TS is like. Can any of you who were diagnosed older, like older than 8 at least, tell me what that felt like, to get that bomb dropped on you? Please be as descriptive and detailed as you are willing!

THANK YOU SO MUCH in advance!!!!


(6 comments | Leave a comment)


Date:December 1st, 2006 12:19 am (UTC)
Hey Maria this is Sam
I was diagnosed at 13 and I cried. We went to the doctor's and they said TS was a possibility, and said it was associated w/ some learning disabilities. I immediately thought there was no way I could have it. Later, they called my house and my parents explained that I had it and I probably wouldn't be able to have kids. I was really upset about that and also thought about the learning disabilities. I wasn't thinking clearly, so even though I had had TS all my life I was afraid about the possibility of starting to have trouble in school. I didn't think it was fair. I didn't want to take shots every day. I was angry that they had just figured out what had been wrong all along.

Since I'm one of the characters, I hope this helps :)
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Date:December 1st, 2006 04:32 am (UTC)
That's great, hun! Thanks so much.
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Date:December 1st, 2006 04:53 am (UTC)
hi maria,
i'm more than willing to share my story with you, but do you mind if i email you directly? you can either leave me a note on my journal with your email, or email me your email at arynzfyre@yahoo.com.
Date:December 7th, 2006 02:17 pm (UTC)
hey maria...I was probably diagnosed the oldest, myself only learning that I had Turner's Syndrome at the age of 21........I don't have any of the physical anomalies (webbed neck, elbows, etc.) and I'm tall for a TS girl (5"4)....so we never thought anything was wrong til I was 16, when i hadn't gotten my period or breasts yet.....Im a procrasinator by nature so i didn't do anything about it til I was 19.....yup, I graduated college without a period, without any breast development and without knowing why!

Growing up the hardest part was hearing other girls talk about their periods and me not really being able to join in....obviously they didnt realise I didnt have it yet so they just kept talking about it and I'd nod uncomfortably and try to change the subject

As I got older the hardest part became starting a relationship.......I'm almost 22 years old and still look like a 6 year old.....(I haven't started treatment yet)..........that makes it INCREDIBLY hard to start a new relationship...I don't only have an A cup...I have literally nothing, like a wall......so yeah, right now that's the hardest part.....I literaly can't wait to get the treatment started and to look like a normal woman

When I found out I couldn't have children...I was 2o....I drove home after my doctors appointment, after a few minutes had to park the car because I was crying so much......The first week was the toughest, I pretty much cried every day........I was also really petrified about having my ovaries removed (which I still have yet to do)

I guess what keeps me sane is the fact that all of these are fixable....breasts, periods, getting ovaries removed...by the time I'm 23 hopefully these will all be dealt with and I won't even think of it anymore!

anyways, thought i'd offer you my perspective seeing that I rarely hear about people being diagnosed in their 20s!
take care and good luck with the play :)
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Date:March 9th, 2007 11:47 am (UTC)
Hi! I think I should join this community...
I was diagnosed with TS at about 10 years old. And the crazy me was happy about it! It was like finaly realizing what was wrong about me. It was a relief to know. It didn't sound serious. (Only the injections...) I knew that I would gain normal height and a normal life. But then, my first thought was: hey, why is it an X chromosome missing? Maybe it was a Y and I should be a boy. Maybe I should make a post here and ask if anyone had any similar feeling of confusion.
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Date:July 5th, 2007 07:43 pm (UTC)
Hi Maria :D

I have been diagnosed since birth and so I do not know what that is like but I commend you on writing a play about it and bringing it more out there for people. I do know what it is like to have it all my life, the health issues and being looked at like I am different.

My friend Chelsea has a less severe case and was diagnosed until she was sixteen and it was hard for her but then it also helped explain some things about her body, etc. She like me does suffer from self-esteeme issues, and feeling like other people cannot fully understand her except some of her friends (at least most of the time) LOL.

Well I hope this helps in some way and I would love to keep in touch with you as I love theater and would love to chat with others about TS and your play.

If you want feel free to e-mail me at jenls_81@yahoo.com

Have a great day,

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