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November 20th, 2010

07:04 pm
Howdy from East Texas!
My name is Kayla. I'm 24, 5', an aspiring writer, and happily married. I was diagnosed with TS from birth.
Something I've been struggling with lately is children...I always thought I'd be more okay with adoption and its something I still very much want to do (my hubby is adopted...it makes my heart smile to think of how he will be a great adopted father!) but lately I've been grieving the fact that I can't have kids. It doesn't help that I have several friends who are expecting.
Anyone else struggling with this? Anyone know anything about the success of fertility treatments in TS girls?

Anyhoo...glad to find this community! Wish me luck, I see a new endocrinologist Monday!

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August 26th, 2009

05:51 pm - Intro post....
Who are you? I'm Suze. I'm 23. I'm engaged. I'm from the East Midlands in the UK. I graduated last year and in September I start my MA in Social Work. I have a very extensive Userinfo for anyone who is interested in hearing more and would love to make new friends especially in the UK.

How did you discover you had Turner Syndrome? I was diagnosed when I was 9 days old and cannot recall a time when I did not know, Mum had a very open policy when it came to answering my questions.

If there was one thing you wished was different what would it be?
My ovaries (I wish they existed....)
My height (I wish I were 4/5 inches taller....)
My feet (I wish I did not have lymphaedema....)

I wish people wouldn't say... 
I doubt there's much I can say here that hasn't been said. I get tired of the platitudes people offer when you tell them. It annoys me how people talk about it as if they're not sure whether to talk about it or not. I appreciate people want to be supportive but would just like to have something normal, y'know? Most of all I guess I dislike how I feel about what people might say if I open up about my true feelings on some aspects of my TS.

Get on the soapbox!
I would have to agree with what Kimberley said about gender identity. I really struggle on this one and find it hard to talk to people about despite having an incredibly supportive fiance and Mum. It also annoys me that everyone seems to have an opinion and wants to 'help you' as opposed to just letting you be which, in some cases, would be much better! All in all though I do think I've been lucky with my treatments and support I've recieved. I cannot thank my Mum, Grandma or Sister enough. Having said that don't even get me started on how men act/react.

Like I said...just wanted to say Hi! *waves* and hopefully make some new friends. Open invite to add me if y'all like.

Look after yourselves all...

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June 3rd, 2008

10:20 pm - My introduction..
 I figured I would follow Liz's lead and take my turn...

Who are you?
I'm Kimberly, I am 24 years old from Baltimore, Maryland, USA. I graduated a few years ago with a degree in Political Science and Presidential History and Elections have long been a big interests of mine. I am currently pursuing my Master's Degree in Public Administration, which I hope will lead me to a management position with a law firm, as I have great interest in the legislative process, but don't actually want to be a lawyer, and most of us Poli Sci Majors end up in law some way or another. Other than that, I have a passion for alternative rock music and for television, particularly nighttime soaps. Other than than, I bowling, surfing the net, and eating too much junk food :D

How did you discover you had Turner Syndrome? I found out shortly after I turned 5. My Kindergarten teacher noticed that I was shorter than most of the kids in class, and that something just wasn't right, so she suggested my parents take me to an endocrinologist, where I was diagnosed.

If there was one thing you wished was different what would it be? Similar to Liz, before I'd have to said to be a more a normal height, but these days I'd just like to be a normal woman, someone who had developed like a normal woman, and had the ability to get pregnant. It hurts when I hear a woman say how being pregnant gave her a new appreciation for her body and made her feel more like a woman, because due to certain health issues, mainly high blood pressure, I wouldn't feel safe using IVF to get pregnant, so I'll never know that feeling women talk about...

I wish people wouldn't say... I'll have to agree with "But you can always adopt!" and add to it, "at least you'll never have to go through the pain of labor", please to give up dealing with the emotional hardship of not being able to have kids, I'd be willing to take the temporary pain of childbirth. As for adoption, yes, it's an option I plan to look into, but it's a very difficult an intrustive process and there is definitely no gaurantee you'll be approved to adopt. Some of the health issues associated with TS may very well be a roadblock, not to mention the cost, so you can "ALWAYS" adopt is just not a true statement. Plus it's just trying to sweep the issue under the rug, adoption is NOT a substitute for biological children. Not saying  it is better or worse, just that it's different. That needs to be understood.

Get on the soapbox! I guess I've already sort of brought up what I would like my "soap box" issue to be and that is handling the infertility issue and how those of us with TS feel about our sexuality and our gender identity, because I belong to this website gendersinx, which includes TS as well as many other intersex conditions. If you look up intersex online you see Turner's is included a lot. Does this surprise you? How do you feel about this? A lot of times I really don't feel like I count as woman and see myself as this genderless thing. However, it's not something I like having defined for me, or anyone else with TS for that matter, we should be treated like we want to be treated, and be able to define who and what we are instead of someone else defining it for us. We should be able to decide whether we're women or not, not some so called medical expert...I think the perception of TS is what gets to me, I mean I had never thought of myself as anything other than a girl when I was little, but then to come to find out I have this condition where my womanhood is basically medicalized and not natural, and that technically, genetically, I am not really female, well I guess it's a bitter pill to swallow...

Any thoughts?

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07:31 pm - London calling... anyone there?
Hey All,

I'm conscious of the fact that this community has been somewhat inactive recently, and I feel slightly responsible as the owner, so here's something to shake things up a bit and actually find out who we have here!

I am in a somewhat strange position that I've only ever been face to face with someone with turner syndrome once, which is part of why I started this community in the first place to give people a place to vent to other people who understand what they're talking about.

So, with that in mind what I think would be fun is if everyone takes a turn to post some information about themselves, and stuff they want to talk about... so I think I'll start here and now. When you make a post you can use the loose format I have here or add stuff, take it away if you think it's irrelevant to you, etc. particularly if there's stuff you don't want to talk about or stuff you do which I haven't seen fit to include! Hopefully we can get discussions going.

This is me then... in a rather bizarre kind of nutshell.

Who are you? I'm Liz, I'm British and 25 years old. I live on the south coast but I've travelled quite a bit in my life. I love seeing and experiencing other countries, and also love languages and attempting to talk them. I studied genetics at Birmingham uni mainly because I had a huge curiosity about turner syndrome which became a passion for biology and genetics in particular. I love music (playing it and listening to it) and I draw (rather badly!)

How did you discover you had Turner Syndrome? I was lucky in many ways, I grew up knowing that I had it, it was discovered just after I was born with 'clicky' hips and puffy hands and feet. I'm a mosaic though, with an XO / Xi genotype

If there was one thing you wished was different what would it be? If you had asked me this question 10 years ago I would have said I wished I was a decent proportion and height (trying to buy trousers anyone?) and to get rid of all the damn moles/nevi I have. But despite having grown up understanding my condition I'm only really now starting to feel and grasp the fact that I won't ever have a child that's genetically mine. So, that'd be the one wish I think.

I wish people wouldn't say... "But you can always adopt!"

Get on the soapbox! So, just to throw out a topic of conversation here which is sort of related to my pet subject and not so much to turners. My soapbox is going to be about evolution, the misconceptions and the bastardisation of it! As you can probably tell from the introduction page, misinformation is a pretty big pet peeve of mine and there's not many theories as misunderstood and vilified as evolution.

I think the one thing that I would love is to completely separate evolution from any religious theory, as much as people try and twist it around, as far as I'm concerned it neither supports or detracts from the idea of any divine power you happen to believe in. You can believe in any kind of god and still grasp and allow yourself to accept the evidence that supports evolution. Equally you can't really use evolution to argue that there isn't some kind of divine power, particularly given the myriad of ways people believe in and worship higher powers.

The reason that I have such a crusade to try and promote the understanding and teaching of evolution is simply because it's such a key concept, it literally underpins most of modern biology, and it saddens me that people almost seem afraid of understanding it, I would like people to be able to have more confidence in the faith that they might have than that. Evolution is an elegant and beautiful theory, especially on a microscopic level.

So, evolution is the non-random selection of randomly varying replicators.

Simple, no?
Current Mood: curiouscurious

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December 7th, 2007

09:37 pm
To everyone who replied to my previous post, I want to thank you so much for taking the time out to talk to me. My post was very long winded and had many spelling errors because I was trying hard to get everything across quickly :)
I'm definately going to stay in touch with all of you, as I'm sure anything you can share with me will be valuable. Thanks again!

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09:24 am - Hello Everyone!
Hello everyone. I hope this community is still active, I know it's been a while since anyone posted anything. I can't believe I didn't think to come looking for a place like this sooner.
My story- (I will try to make this as short as possible, although that's going to be tough)
I had never even heard of Turner Syndrome until I met my fiance. He has three children from a previous marriage. Two girls and a boy. The middle girl, age 10, has turners. Discovered when she was 4 or 5. First sign of a problem was When she was an infant. she never slept, just cried constantly and ate constantly. My fiance said that he thought something was wrong with her right away. He thought her heart rate was too high for a baby. Anyway, for a few weeks he and his ex wife thought she was just colicky. Then they realized something more serious was going on so they brought her in for testing. They then discovered that she had a serious thyroid problem and a heart valve problem (something about having the same valve instead of two different ones) Basically, her thyroid was completely out of control and could go up or down in the blink of an eye. So for the first few years of her life, they were trying to deal with this thyroid problem, and basically, it was the worst thyroid problem anyone had ever seen. Eventually, when things just weren't getting any better, they started going to a special children's hospital in Philadelpia, where they did more extensive studies. That's when they found the turner syndrome. My fiance and his ex wife both had their genetics tested and from what they were told, the gene for turners was carried by his ex wife. My fiance's genes were fine. (I don't know much about the genetics aspect of it but they have one other daughter and one son who are healthy as can be. No one else in her family ever had it, either) So, then she started on growth hormone, weekly blood draws, and whatever else. So, as a result of the turner syndrome she has graves disease, hashimoto(sp?) something, a heart valve problem, stunted growth, and she will probably have kidney problems and non working ovaries. She is a little shorter and chubbier than most children her age, but she does not have a webbed neck. These things are not even the biggest problem though. The biggest problem is her behavior. She has serious behavioral problems that no one can figure out. First off, it appears she has something like adhd and bipolar disorder combined. At first they thought that this was the result of the thyroid activity (as in her being hyper when the thyroid was working overtime and her being sluggish when the thyroid was slower) but now they have pretty well stabilized the thyroid with medication and the behaviors persist, so they have ruled that out. She is a slow learner and needs special ed when it comes to math and reading. She cannot focus on one thing for too long. But worst of all are the temper tantrums. She has them when she does not get her way. For example, if you are in a store and she asks you to buy her something and you say no, she does the whole throwing herself around like a 2 or 3 year old would do. There are a slew of other behaviors but to put it bluntly she has what looks like a severe case of bipolar and is on a bunch of medication for that, as well as the synthroid and injections. She goes to children's hopsital at least weekly for visits from everyone from the heart specialist to the endocrinologist to the psychiatrist. Her parents and the doctors have been trying in vain to help her for years. Very recently, her bahavior has become so out of control that her mother had to have her admitted to a children's psych hospital where they basically took her off of all her psych meds and slowly adjusted them and studied her and the only conclusion they came to is that the behaviors are not out of her control, as we all thought they were. The doctors there say that she must be acting this way on purpose, as there is no outstanding clinical reason why she can't control her temper to a reasonable degree. When she was at the clinic she was sweet as pie and they were ready to discharge her early. So then they started having these therapists coming to her house to observe her interacting with her mother and siblings, and when they were there she was fine. She behaves better when she is at our house than she does when she is at her mother's house, but I think that's because she's only with us every other weekend, and when she's here, we do a pretty good job of keeping her entertained because it's the weekend. Basically, to put it bluntly, between her mother, her father, and the various doctors and hospitals, THEY HAVE TRIED EVERYTHING and nothing has been successful as far as her behavioral problems. I suppose the only thing they could do is medicate her into submission, but obviously that is not the kind of thing we're after. While she was at this clinic they mentioned the thought of her having some type of non verbal learning disability which means that she cannot read tone and inflection in voices, and that basically, when you tell her no, she cannot have something, she understands that as "no one loves me" and that's why she has fits. And now her mother wants to take her all the way to vermont to meet this one and only doctor who deals with this...if you ask me, all this new stuff seems like doctors just grasping at straws here. My feeling is that maybe she has some sort of deep rooted anger at the fact that she has turners and is "different" from other children. I mean, these doctors test her for everything under the sun and moon and back, and I understand and admire that but really I think it's more simple. So I guess at the end of this long winded "essay" I am just wondering if maybe anyone can shed some light? I think her behaviors come from nothing more than her maybe just feeling different from other kids and her maybe having some self esteem issues and whatnot. You would think with all the psychotherapy she's been through that they would have covered that base but it seems to me that the more everyone digs deeper in to her and medicates her with this or that that it just makes things worse. I am fearful that one or both of her parents (not to mention her brother and sister) are on the verge of a nervous breakdown and they basically just feel hopeless at this point. In reading these entries I see mentions of a camp for girls with turner syndrome. What was that about? did that help you come to terms with your condition? was it helpful meeting other people with turners? I would love to hear from anyone who has turners. All I want is the best for my fiance's daughter and I hate to see her in and out of psych units as I'm sure it's tough enough having to deal with the turners alone. (Although there was really no choice but to send her there this past time, as she was a threat to herself and her siblings and her mother was only doing what she felt was best for her daughter and other kids.)
Maybe the camp might be a positive resource for her in the future? Maybe she's having trouble with self esteem? Again, I thought this would have been covered already as the entire family and added on family has been in counseling over numerous issues ranging from her health to the divorce. Anyone kind of help at all would be appreciated as we all just want her to grow into a healthy, well adjusted adult :)

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April 6th, 2007

07:55 pm - Male with a question

Obviously, I don't personally have Turner, being a male. But my best friend does. Before meeting her, I'd never heard of it, but I've been learning about it since both through her and through Internet research.

Reading over some of the last few posts, and comparing with things my friend and I have discussed, I did have one question, and I hope that asking it won't make anyone uncomfortable.

Is there a line of measurement between "having a child is a serious risk" and "can't have children"? She and I have talked about that it would be a serious risk for her, because of a high chance of passing on the Syndrome if she had a girl. But it's apparently a possibility for her, not an impossibility. So I'm wondering if there's a border line there. I *do* know that she's told me that she had a very rare positive in her puberty having started normally without need for hormone treatment. She is of course quite small vertically, but her feminine development seems to have followed normal lines, just scaled down for her size. If I were to take a guess, I would think perhaps that the hormones are the dividing line between "dangerous" and "can't", but I didn't want to go on my own guessing. Can anyone explain?

Current Mood: curiouscurious

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November 30th, 2006

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!!!!


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August 30th, 2006

10:11 pm - TS and weight problems...
Every since I was a preteen, I have been slightly overweight, and its become even more of a problem as I've gotten older. I am currently about 15 pounds overweight by BMI standards for my height, and I was just wondering if any of you other TS girls have had issues with weight? I know having TS doesn't automatically doom you to be overweight, but I have heard it is more common in TS girls. I admit to not having the best diet in the world, and I am trying to change that, but I have heard that be on certain forms of birth control and HRT can make you gain weight. I also heard that growth horomone is a fat blocker to a degree, so once off it do the pounds come on easier? I am just wondering in my quest to get to a more healthy weight, if these factors may make it more difficult for me to drop the extra pounds. Please share with me any experiences you may have with this.

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August 25th, 2006

09:02 pm - New to the community...
Hello All. My name is Kimberly, I am 22 years old from Baltimore, Maryland. I graduated with a Political Science degree last year and am currently working doing research for a law firm. Anyway, I was diagnosed with TS when I was 4. I find that sometimes I completely forget I have TS and other times it can feel like an overwhelming obstacle. I was on growth horomone from 8-16 and began horomone replacement at 15. Anyway, I wasn't made aware of the facts of how my body was different from a normal woman's and that there was a very slim chance of me having children that were biologically mine until I was around 10 or 11. Until this time I had only thought of having biological children and never considered adoption. To be honest, while I definitely have the utmost respect for people who do so, I'm not sure that will be the right choice for me when the time comes. Anyway, as I have gotten older and starting to think more about these things (marriage, children) I have began to struggle more with the reality of never having children, and how I want to handle my options. I don't have a partner currently, but I feel like these feelings are something I should sort out to know where I stand myself before a partner and I could discuss it. I feel like no one can really understand all the feelings that go along with this like another woman with TS may, and it would discuss with other woman with this condition how they feel about it, and how they discussed it with their partners, so I was so glad when I found this community. Also, I know having TS can be difficult at times when you are growing up, so if any of you younger want advice or just to talk to someone who knows what you are going through, feel free to get in touch with me...

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