I have one X chromosome (Turner Syndrome); AMA!

I have Klinefelters (XXY). I can give you one of my X chromosomes if you want

I wish that were possible. Very kawaii of you to offer, though.

>kawaii

u wot m8

It's Japanese for "cute" or "adorable"

source: I watch a lot of anime.

Should've just let him learn to use google.

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Hehehe.

I made you a subreddit, just because I think this is an interesting thing and because the name is novel.

Shoot me a PM and I'll hand over the reins of /r/OneXChromesome. Its like /r/TwoXChromosomes, but just for you!

Thanks!!

You are damn gorgeous. I could swim in those eyes forever... <3

Aw, shucks!!

Have you talked to the other girl who posts all over who has Turners?

No...who is she?

she has serious, serious self-esteem problems and posts all over reddit constantly looking for validation. nearly all of the comments are always "shut up, go away" yet she accuses us all of attacking her appearance causing her to seek even more validation.

I think it would actually do her good to talk to you, you seem to have a much better attitude about Turner's than she does.

I hope she accepts it someday,

This is quite interesting. See, I am Christian and one of my best friends is a transgender woman. She has received a lot of persecution from the Christian church, though I don't understand why. But then I see people like you, and people with androgen insensitivity syndrome and think, "If these things exist, why do people have trouble with transgender people?"

Anyways, I hope you know that you are a beautiful and normal woman. Normal just means that you have your own struggles and triumphs that no one else has, just like everyone else. Thanks for this AMA!

I guess my only question would be this: does anyone ever question you being a "real woman"? I hope not, but I could see some insensitive people thinking that.

Thank you so much!

Nobody has said such to me, but sometimes I feel like less than a woman. I am biologically female, and look significantly more "normal" than most TS girls, but sometimes I feel un-feminine.

Aside from jerks, what would you say your biggest obstacles have been so far?

Growing/development. I spent a year and a half on human growth hormone. Now I'm on estrogen.

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YES IT IS. Oh my god, the hormones make me feel crazy.

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No, I don't, thankfully.

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I have very minor webbing, and my eyes are pretty normal. My chest is broad though.

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Oh wow, I haven't had any surgeries yet. I have a bicuspid aortic valve and an enlarged aortic root. I started out at round 4'9" or 4'10" and now I'm 5'0" (and a half :P).

Estrogen makes you feel crazy yku say..

Well, that's an exaggeration. But there's something to feeling hormonal.

Are you attracted to men or women? What is your romantic life like?

Pansexual, with a preference for cis men. I have a boyfriend currently.

What are cis men? I looked up the definition but it was really confusing.

People who were born men and identify as men. AKA a "normal" guy.

Yay for pansexual! Me too!

You seem to be down on yourself a bit in this thread. For what it's worth, I think you're pretty, and I'd go so far as to say your boyfriend would agree haha.

Maybe you're done with the AMA, but I was going to ask... I am transgender and I don't see a lot of hope for the dating world. I can't seem to find anyone that truly cares about me, or doesn't want me for only sex.

My question is, how do you view dating and relationships with a genetic issue? I'd say my genetic issue is quite different, but it causes it's problems. And I personally don't have much, if any, hope of dating someone that actually values me as a human being. Are you optimistic in viewing your future dating?

Also, you said elsewhere that sometimes you feel as though you are "less than a woman". I understand that feeling well, but I don't think you should feel that way. ( ^{I feel that way every moment of every day} ) My biggsst advice would be... Just be the best you that you can be. :-)

Edit:: I phrased that weird and insinuated that you were transgender. It wasn't intended, and Im sorry. Brain no worky-worky late at night-y.

Edit 2:: I'm redundant. But I'm not gonna change it. Edit2 is for missing a few words. I suck tonight. Sorry!

Don't be down on yourself either! And for what it's worth, I value you as a human being. I'm worried that I won't find someone long term because of this, but who knows. Also, because I'm so insecure. My TS has kind of triggered a bit of mental issues haha. Thank you so much, you lovely person.

I understand insecurities well. On top of all of my transgender issues I have to deal with severe depression and generalized anxiety, also pretty severe, are the highest "mess up my days" mental issues... so I understand that stuff as well.

You seem to be super upbeat and positive though. May I ask, how you view relationships? Specifically in the context of marriage, or family dynamics, or things of that nature? Does that make sense? It's late... I ought to sleep. Lol.

Also, you're welcome. ^{thanks for the valuing me comment. that meant a lot, surprisingly.}

I have depression, anxiety, and an eating disorder. It's a lot of fun.

I try to remain as positive as I can be. I'm really quite pessimistic, but I'm working on it. I would like to get married someday, but it's not a must. I just want a long-term relationship with somebody and hopefully kids come into the picture. Love is the dynamic I'm looking for.

Sorry for my ignorence, but how is pan different than bi? Sexual, that is :P

Pan includes attraction to transgender or nonbinary, whereas bi doesn't.

Do you have a webbed neck?

Not noticeable, but slightly yes.

Hello! I'm ignorant to what exactly Turner Syndrome is. I've read through these comments and looked at the Wikipedia page, but I'm afraid I don't quite understand exactly what your condition is. Could you perhaps explain it to me in layman's terms? ELI5, if you will? Thanks!

Most people either have XY (boys) or XX (girls). Girls with Turner Syndrome only have one X. This means that they don't produce proper estrogen to go through puberty or grow properly and are infertile. Oftentimes, they have development problems and look "masculine".

A quick google search of your name (I am so sorry to invade your privacy, this is a habit that will never die) showed me that you have the mosaic version of TS and that you had questions about your fertility. I am a male but my wife went through infertility questioning (for other reasons) and I can understand how this can be such a big deal for women (us men tend to not understand why it is a big deal until we live it).

For those who don't know, TS affects 1 in approx 5000 females. The mosaic version of it is 3 times rarer, so 1 in 15000.

About 5 or 6 months ago, I took part of a discussion forum on health issues and a doctor was talking about pregnancy for TS patients. From memory, what I remember was:

a) 5 years ago, it was out of the question. Today, it's possible but risky. In 5 years, chances are it will be an acceptable risk. The current rate of infertility treatments (embryo transfers) for TS patients is above 40% which is an amazing number if you look at other "risky" categories such as Asherman's.

b) The doctor said that one of the suggestions he always went through with his female TS patients was to look with them about cryopreserving their ovarian tissue to help the infertility treatments in the future. The only problem with this is the optimal age to take the tissue is not defined yet, more studies need to happen. But you should discuss with an experience doctor ASAP (depending on your age)

Now back to the AMA! You answered you were against abortion. If you were pregnant and were prenatal diagnosed with TS, you would go ahead with the birth? If so, is it because of religious belief/personal conviction or because you don't think TS is a good reason enough to terminate a pregnancy?

Good luck and I wish you all the best!

Thank you so much! That's a lot of good information to know.

Yes I would go ahead with the birth. It's not so much moral, but I want children and don't see TS as a good reason to abort.

Do you have a vagina or blobs?can you go to either or public bathrooms? You're really pretty. Trying not to sound like a creep if it makes u feel better I'm gay o.O .... but you're still attractive!

This makes me laugh. I have a vagina and I use female public restrooms. Thanks!!

It's not just like a Barbie down there?

Nope. I definitely have a vagina.

My sister(12) has this. I feel bad for her going to high school and being shorter than other students. Is it hard? Any tips for her? I feel like she will have a rough time and I don't have a lot of info in it.

All she has to know is that nobody can make her feel bad unless she lets them. And, when worst comes to worst, remember the TS slogan: Short Happens.

So how has it effected your day to day life?

Well, I have some minor heart defects related to it, so I have to be careful not to strain myself too much. I'm also dreadfully insecure because of how it makes me look. Other than that, I live a pretty normal life. When I'm older and ready to start a family, infertility caused by TS will be a problem.

ITT: OP has beautiful eyes.

Lots of compliments on my eyes, it's nice.

Maybe it is not a fair question; but what is your opinion about abortion? would you support a mother aborting a fetus with Turner's or Down's?

I couldn't see abortion as an option personally if I could ever conceive. I can sympathize with mothers in that situation but...

You are SO pretty!

I have one question! Do you consider to have kids one day?

EDIT: I know that you can't get pregnant.

Thanks so much! And yes, I plan to either have my younger sister donate eggs or adopt.

Wonderful! :)

Have you ever encountered problems with other people, in relation to your condition? (Sorry, I'm not trying to sound rude).

Like; people have made fun of your looks (though you don't have the look that says "HEY I HAVE TS!!") or that someone has been mean to you because of the TS?

People made fun of my looks for years, even before I knew I had TS. As for directly being mocked for TS, no.

Do they make fun of TS-related things or just typical bullying? You mention you're built like a boy, for example.

They have made fun of my appearance and, when I was heavier in the past, my masculine build. Not direct TS bullying.

Your or someone's legal name is on the documentation.

It's my name. And I know.

Then what is the bit at the bottom smudged out?

I mean why one thing and not that? Just curious is all.

That had phone number and address written down. I don't care about my name.

Don't ever be self conscious. You seem to be well grounded and are certainly very beautiful. Good luck in whatever you want to do/be in life.

Thanks so much for your kindness.

you're very brave, smart and beautiful. What inspire you to start this thread?

Thank you so much! I was going through my closet and found my patient care binder with my TS papers. I thought maybe some people might be interested in the condition.

If you happen to come back to this, I am curious about your sex drive. If its too personal, I understand. I saw that you are on hormone therapy and have a boyfriend and it made me wonder if you have a reduced sex drive compared to non-TS females. I also realize this may be hard to quantify, but if you have insight I would like to know. Thanks for doing this AMA - you seem like a pretty awesome chick and I know you've heard it a bunch but you are gorgeous.

Thanks. And my sex drive is pretty low.

Did your boyfriend know you had this issue already or did you tell him? If you told him, how did he react?

I don't even know if I mentioned it, but I think I might have before we were dating. He knows I have lots of different problems, but he's supportive.

That's really good to hear. Just judging by your picture, I wouldn't look at that and go "OH SHE LOOKS LIKE THERE'S SOMETHING TERRIBLY WRONG WITH HER", you just look pretty, frankly.

That means so much, thank you!!

Seriously the one picture you posted looks like a normal person. Do you have any of the physical things?

I'm built like a boy. Also have heart defects related to TS. Fortunately that's all.

Is everything ok downstairs, does it look and behave normally?

Will you ever be able to have kids?

I don't have a period but other than that, yes everything is "ok downstairs." It looks and acts normal.

No, I won't.

Do you have a coarctated aorta?

Bicuspid aortic valve and enlarged aortic root.

Interesting. I hope you get regular cardiology check ups!

I do. I get echocardiograms and an MRI once a year.

I understood all of those words! I have those too! DEFECT BUDDIES! Unrelated to your condition, I was just born with it and it's my lot in life.

High five

High five

What does your voice sound like? We talking 80 year old blues singer or my 16 year old squeaky step sister telling me about the cute thing her cat did.

A little higher pitched than usual, but I sound like a normal teenage girl. Not "squeaky".

If I see you out and about could I tussle your hair? Also are your eyes that big or is that some female make-up kung fu magic?

Go for it! And yes, my eyes are that big.

Do you tell your friends or acquaintances about your condition? how did your parents take it?

I do, and they support me. My mom was heartbroken, and my dad didn't seem to react.

And the other family members? siblings, grandfathers..how did they take it? any history of the condition in the family?

I'm the only one in my family with it. It's kind of a random thing that can't be controlled. My little sister and grandmother know, but they don't really mention it.

Did it bother you that your dad didn't seem to react? I have a one year old and try to maintain neutral reactions to events, so I'm curious about how one's child might react

No it didn't. But that's because I don't have a good relationship with my dad anyway. You don't have to react too strongly, but let your child know you care.

Thanks for doing this AMA! Allow me to say you're a very beautiful girl :). As a complete ignorant of Turner's syndrome, and since you mentioned a lack of puberty signs, may I ask how you deal now with things like menstruation for example? Do you have to take any hormone therapy for that? Will you be able to have kids if you want them in the future?

Again, thank you so much for the AMA. Keep being the great girl you are!

Thanks!!! I've never had a period. Even though I don't have a period now, menstruation might be in the future. I currently wear estrogen patches for hormone therapy. Children aren't a possibility for me it seems, but there are always advances in medical science (and I am more than willing to adopt and give a child a home).

you are very cute :D

Thanks!

What is the most common thing people have asked you when they've found out that you have Turner Syndrome? Do you get any benefits from any organization/welfare support? What's the worst that have happened to you as a direct consequence of your ''disability''?

Pepsi or Cola?

Thanks :)

They always ask me "So are you a real girl?" :P And I'm not positive, but I think there's some Children With Disabilities support in my insurance, but I don't think we're directly paid anything. The worst is how often I visit hospitals, and I've had chest pains from an abnormal heart, other than that I'm pretty good!

Coke.

So i don't mean to be rude. Guys have XY girls have XX What is ur gender identification? And physiological sex? Do u ever struggle finding both sexual and gender identity?

I am female. I identify as female, and am biologically female. I'm pretty much at peace with my identity.

I know you have 300 comments but I'll try anyways. Do you know if there are sufferers of this syndrome that are male? Like could one sufferer have just one X while another could have just one Y?

Well, this particular syndrome affects only females. I don't think it would be possible to have only one Y, as all babies developing the womb begin with an X that either develops another X or a Y. In my case, one X didn't develop, but I don't think a lone Y is possible. The closest male equivalent to Turner Syndrome would be Klinefelter Syndrome (XXY).

Can you walk and that?

What can you not do that people with normal chromes can?

I can walk. I have most normal functions. I can't develop or reproduce like a normal person.

So no babies?

Unfortunately, it doesn't look like it. I can adopt though.

I wouldn't see why you wouldn't be able to.

The lack of a second X makes me infertile. I can't really get any more scientific than that.

No I meant adopt. I don't see why you wouldn't be able to.

Do you struggle doing anything?

Oh yes, I can definitely adopt. And I can't be too physical and strain myself, because of heart defects. I also have some related spatial issues.

10/10 would do you :P

I'm, uh, flattered?

Have you checked if you have superpowers?

Yes!

... I don't :(

What is your IQ?

Never had it tested.

What is your guess?

Can't really say, but I like to think I'm pretty smart. People say so, at least.

Thanks! I'm in medical school, and I learned last year that people with your condition don't necessarily have a mental handicap. It sort of surprised me. Thanks for doing the AMA.

No, I'm definitely not mentally handicapped haha. Also, medical school? Keep working hard and be the best doctor you can.

Because I can't read medical charts... How tall are you exactly?

I'm genuinely curious about what you mean by lack of noticable puberty. You mentioned not having periods but did any of the other puberty changes affect you at all?

And what do you plan to study in college?

Thanks for answering!

I started out at 4'9"-4'10" and am currently 5'0" (and a half). I lacked periods, breast tissue, underarm hair, acne and body odor. I still don't have a period, underarm hair, acne or body odor (not that I'm complaining).

I want to major in education and minor in linguistics just for fun. I love children, teaching, and languages so I want to combine my loves by eventually teaching English as a second language in Japan.

In Japan teaching now, ever want any info send me a message.

Thank you, I might take you up on that sometime.

Would there be anything about you that would make it obvious to a stranger (familiar with TS) that you had it? You mentioned somewhere else that you have a slightly webbed neck (I certainly can't see anything unusual about it). Just going through Wikipedia's list of symptoms for TS, some of them would be visible and some of them wouldn't. Are you self-conscious about anything in particular?

I am extremely fortunate in that my TS isn't really obvious. I am kind of shaped like a boy, and I'm insecure about it, but other than that I say I'm really lucky.

Have you gotten any bullying as a result? And how was studying chromosomes in biology?

Oh yes. People love to tease those who are "different". And it was actually interesting, TS was even mentioned.

Huh. And the best way to deal with that is just to not care (which it sounds like you do). What have been some things you didn't expect (or want) to happen during growth? Or did you expect or not know everything happening?

For me it was really sloooowwww. But, um, that was probably mostly my own fault.

Hey at least you try. You seem to have a pretty good outlook on life. That's pretty good. Do you ever want to have kids and if so how does the syndrome affect that?

Yes, I would love to have kids someday. TS makes me infertile, but hey medical science can do wonders and improves everyday.

I miscarried at 5 months due to my daughter having Turner's. She had a huge lump on her neck, a hole in her heart and liquids were filling her organs. What was your mother's pregnancy like for you to have survived which is VERY rare?

It's not too rare. My mom didn't even have an abnormal pregnancy, I was just a small baby when I was delivered. Of course, I'm terribly sorry for your loss.

Are you able to have kids?

No

You do this AMA like every fortnight

I'm a different person. Just found out about that girl in this thread. Not her.

Could you post a picture as proof or do you want to keep your identity private? Up to you :)

This is me. From a previous (non-TS because this is my first TS post ever?) submission. http://imgur.com/hnlX9RI

You have beautiful eyes!

Thanks!