Turner's Syndrome-A Woman's Disease

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Biology 103
2002 First Paper
On Serendip

Turner's Syndrome-A Woman's Disease

Melissa Brown

Imagine that you are 13 years old. All your friends are growing: they are getting taller; they are starting to menstruate; they seem to know exactly what to say at the right moment. You, on the other hand, are conspicuously shorter than your peers; you don't have your period and you seem to blurt out whatever comes to your mind. You would probably feel that you are awkward and begin to develop low self-esteem. This could be the life of a teenage girl with Turner's Syndrome.

Turner's Syndrome is a chromosomal problem that affects one in every 2000 females (1). So in the tri-college community, there may be at least one woman with Turner's Syndrome (TS). Although, you may not know someone with Turner's Syndrome it can safely be assumed that you have unknowingly encountered someone with the disease because of the frequency of the illness. Turner's Syndrome is named after Dr. Henry Turner who described some of the features of TS like short stature and increased skin folds in the neck(1). TS is sometimes also called Ullrich-Turner Syndrome because of the German pediatrician who, in 1930, also described the physical features of TS (1).

Why is it that TS only affects women? Well, TS arises from an abnormality in the sex chromosome pair. In the human body, there are 46 chromosomes grouped into 22 pairs of autosomes (all chromosomes that are not the sex chromosome) and the sex chromosome pair which influences whether a girl has TS. Men have a sex chromosome pair that is XY where the X chromosome comes from the mother and the Y chromosome comes from the father. Women have an XX chromosome pair with one X chromosome coming from the mother and the other X chromosome coming from the father. However, a female baby who has TS has only one X chromosome or is missing part of one X chromosome (1). The female baby receives only one X chromosome because either the egg or the sperm ended up without a chromosome when it was being split in half to make sex cells. The baby girl may be missing part of one X chromosome because there is a deficiency in the amount of genetic material (4).

TS is determined by looking at a picture of the chromosomes which is known as a karyotype. This technique was not developed until 1959(1). Karyotyping was not available to Dr. Turner and Dr. Ullrich in the 1930s. These doctors defined the disease by the physical features that a TS sufferer may have. Some of these are lymphoedema of hands and feet, or puffy hands and feet, broad chest and widely spaced nipples, droopy eyelids, low hairline and low-set ears. There are also clinical ailments that are associated with TS like hearing problems, myopia or short-sightedness, high blood pressure and osteoporosis. People who suffer from TS also have behavioral problems and learning difficulties (1), (3).

In spite of the physical, social and academic problems that a woman with TS may have, she can still be successful in life. Women who have TS have become lawyers, secretaries and mothers. It may be more challenging for a woman suffering with TS to accomplish her goals but they are not impossible. TS is a "cradle to grave" condition which means that it is lifelong and must be treated throughout the sufferer's life span (1). When the girl or woman has been diagnosed she should go under the care of an endocrinologist who is a doctor who specializes in hormones.

There are various medical methods that could be used to make the girl's life as normal as possible. Girls can have an average stature by undergoing growth hormone treatment before growth is completed. Oxandrolone, an anabolic steroid, can also be used to promote growth. Oestrogen is used when the girl is about 12 or 13 to produce physical changes like breast development and for the proper mineralization of bones. Progesterone should also be used at the appropriate time to start the period (1), (3).

Sufferers of TS also have problems like heart murmurs or the narrowing of the aorta which may require surgery. Women with TS are more prone to middle ear infections. If they recur frequently, they may lead to deafness so a consultation with an ear, throat and nose specialist would be helpful. Some of the health concerns of women with TS are encountered by all women. High blood pressure afflicts women with TS as well as diabetes and thyroid gland disorders but the latter afflicts women with TS at a slightly higher rate than non-sufferers of the disease. Osteoporosis may start earlier in TS sufferers because the women lack oestrogen so HRT (Hormone Replacement Therapy) may be considered to delay the onset of Osteoporosis (1), (3).

Women who have TS are further challenged socially because they are disruptive; they blurt out whatever comes to mind and have difficulty learning social skills. A recent study suggests that women with TS may be more disruptive depending on whether the X chromosome comes from the mother or the father. If the woman's X chromosome came from her mother she has more problems learning good social skills than a girl whose X chromosome came from her father. The study insinuates that the X chromosome from the mother instructs the girl to misbehave while the X chromosome from the father tells her to control herself (2).

A girl's disruptive behavior may make her feel uncomfortable in social situations. Her discomfort increases if she has difficulty speaking clearly. However, visits to a speech therapist can improve her ability to speak well. Such behavior can be particularly detrimental in school. Furthermore, people who have TS usually have learning disabilities so they find school less appealing. Parents should present teachers with a leaflet entitled "TS and Education, An Information Leaflet for Teachers" which will help the teacher better instruct the child in class and make learning a less burdensome activity(1).

School is where children and teenagers spend most of their time. For girls who suffer from TS school becomes less welcoming during the pubescent years when social, physical and academic skills are increasingly important. Negative experiences can bring about low self-esteem. Young women who suffer from TS should join a support group where they can find allies and express their feelings. Alternatively, the reticent girl can keep a journal where she can privately reveal her concerns about her life as a TS sufferer. Parents who notice that their daughter is being adversely affected by her inability to "fit in" with her comrades should seek professional help (3).

There are many challenges faced by women who have TS. Some of these challenges require a lot of medical assistance while others only require small alterations to the sufferer's daily life. TS is not an ailment that is intermittent or can be cured. The woman with TS lives with the syndrome every day for the rest of her life. It is important to remember that TS is not transmitted from person to person but it is a syndrome that is borne out of chance; the possibility randomly exists that a female embryo may not have two complete X chromosomes. Since TS does not affect men it can be overlooked despite the frequency with which women are born with it because we live in a patriarchal world. We, as women, should be allies to highlight the diseases that only women have.

 

References

1) Turner Support Syndrome Homepage,gives information about Turner's Syndrome to those interested in TS.
2) Bizarre Facts in Biology, unusual biological information from recent studies
3) TeensHealth. Provides information about health problems faced by teenagers.
4) Endocrinology and Turner's Syndrome, gives information about how endocrinology is helping those affected by Turner's Syndrome.



Comments made prior to 2007
Hi, my name is racheal(14) and i have an 11 year old sister Rebecca and she has turners syndrome! it is also difficult because she has some other problems such as bad rashes that break out on her back and face it is absolutly horrible my sister is 4 foot 2 inches tall and her best friend is 5 foot 3 inches. She is extremly self concious and she is embarrased about her size. My sister and i argue a lot and then when she gets in trouble i feel bad, i don't know if it is because i am not sure how it will effect her blood pressure or if it is because i don't know much about the disease and i want to learn more. I always wonder if she will live a normal life like me, and i wonder the most if she is going to live a long life like normal or is she going to die soon or when. She has a friend Noah that has cff and he will only live until around 16 so i am curious about my sister. We now get along pretty well and right now we are trying to get through the Series of unfortunate events books they are great well i would really like some info so plzzzz write back thankyou ... Racheal, 21 March 2006

Comments

kelly's picture

i never new that there was

i never new that there was differnts ts how do you know the dristfts

Anonymous's picture

TS

i want to know what happen to one who has thid disorder if u dont mind telling me

Anonymous7j3w's picture

Before you marry, please tell the man

1. By having this condition (Turner's Syndrome), by never stating this to a man (myself) that she became married to until after the wedding because "I was afraid that, if I told you, you'd break the engagement and I didn't want you to do that" and by reaching an agreement with the man during the engagement to have and raise two or three children, the marriage that this lady entered was nullified (no divorcement) at the request of the man she was married to.

2. The man (myself) chose to introduce himself to the lady and treat her with respect after hearing four different people speak to her one on one with each closing with a remark about her short stature. (Granted, two of the four remarks were at least comical.)

Anonymous's picture

ts project

i am doing a project on TS and i was just wondering is it sex linked?
and if it is dom or rec os is it caused by a mutation?

I.N.'s picture

Turner syndrome

The Turner syndrome is the result of lacking some genes present of the short arm of the X chromosome. The risk factors that predispose persons to develop this syndrome are still unknown.

peaches's picture

i had a q

i know this sounds really messed up and may be the dumbest question ever but is there anyway that a girl that has ts and odviously dosnt have her period is there anyway that she could be pregnant at all

anonymous's picture

And a technique called in

And a technique called in vitro fertilization can make it possible for SOME women with Turner syndrome to become pregnant. A donor egg can be used to create an embryo, which is then put into the uterus (womb) of the woman with Turner syndrome. With proper supportive care, the woman can carry the pregnancy to term and deliver a baby through the normal birth process.

Anonymous's picture

It is not possible for a girl

It is not possible for a girl to get pregnant and have a child is she is unable to mesturate because she will be unable to produce egg(since mensturation is the cycle of the making of egg and the dying of it if the sperm cannot reach it).
Most women with TS are unable to fertalize.

p.s- its not really a dunb question :P

~*.*~
Hope it helped!
:D

Anonymous's picture

my daughter has ts. she is 14

Hi! I just wish someone can help me understand how to help my daughter make friends. I have family friends who know about her ts but don't really know how to deal with it. She does behave immature, she is beautiful, loving, caring but does not understand how to socialize with kids her own age. She has been bullied all of grade school and now highschool. I feel like not even the principal is very understanding or caring. It is so sad, she just said to me, "Mom I just one friend who i can share everything with, just one friend." It just kills me, i dont know how to help her. Any advice please and thank you.

Serendip Visitor's picture

Hi there, I guess your

Hi there,

I guess your daughter is now 16, as is mine. Your description of her and of your reactions sounds very similar to our experience. Same in every regard - a beautiful, loving, kind-hearted, good-natured but socially immature girl who has really struggled making friends and with being bullied throughout all her years at school. Thankfully, she has usually had at least one friend - and I wasn't sure whether you meant your daughter did too - but of course this makes a huge difference. I cannot really advise you how to improve things for her, because I was in a similar position of despair and heartbreak for much of her schooling to this point. I hope that for your daughter things have improved, as they have for mine along with her peers' maturity and greater acceptance of her just in the last 6-12 months. She is by no means 'popular' but there are fewer incidences of bullying and she is happily a part of small supportive group. One doesn't need to be 'popular' in my book, and I reinforce this with my daughter daily, encouraging her to focus and take pride in her unique attributes that mean she is rare and special, and not a carbon copy like the masses who appear popular through weight of number and their sameness. They travel in packs - it validates them and makes them feel superior. But it is all in the eye of the beholder and of no real importance. And in the meantime, all I can say is you will need to be that friend and her support. It sounds like you already are that, and as long as she has you - an outlet and a place to turn - know that she is protected and comforted. The world can be cruel to these girls, but eventually with some maturity, anyone of substance will appreciate their beautiful nature. Best of luck to you both. It is a pity we are not in the same part of the world so they can be a support to each other.

student's picture

Here are some suggestions

Here are some suggestions that can help you cope:

* Join a support group for girls with Turner syndrome. Ask your doctor or parents for more information or for help finding a Turner Syndrome Society chapter in your area.
* Stay active in sports or hobbies that you enjoy.
* Consider doing volunteer work. Helping other people can boost your self-esteem and your confidence, too.
* Consider talking to a professional therapist. A qualified counselor or other mental health professional can help you build your self-esteem and address your concerns about living with Turner syndrome. \
* Keep a journal or diary in which you can record your thoughts and feelings about the challenges you're dealing with.

here are some suggestions from kidshealth.org/teen ... im doing a project on ts and came across all these pages that are really helpful so i hope this can be helpful too :)

Anonymous's picture

for anyone on here with ts

for anyone on here with ts know it will be ok:) i have it it just makes u struggle a little more thats all.

Lisa's picture

Hello all Turner girls.!

I would like to ask. If I have a Turner is it possible to skip my period if i dont take my medicine. Because its not fair that if i cant have a children that i must have a period every month. Is it possible like skip couple month?.What do we even need to have a period when some of us cant have children. There should be some benefits.
Wishing all the best!

peaches's picture

i havent been on my birth

i havent been on my birth control for like 5 years its a bad thing to skip it your boby dosent make the hormones it needs so you could have a lot of complications and get sick if you skip it

Anonymous's picture

turner syndrome

Hi. I have a 16 year old friend who has turner syndrome. I feel a bit sad for her but she copes with it everyday. When I first met her at school, I didn't even care about her height. SHe is shorter than me but since I am the tallest in my class, I was already used to it. Anyway, when she told me she had turner syndrome I was like "Ok whatever". Now a year has past since she told me her secret and know I realize all the things she has to go through. I am glad that I have her as one of my truly best of the best friends. WIthout her I wouldn't kave known what true friend is. Thank you

lorrie's picture

Hello. I just want all to

Hello. I just want all to know that we have a daughter with
Turner's (mosaic.) We did not find out until she was 15. I
must say, that was really hard for us. I wish we would have known the diagnosis sooner. I think, (I know) we could have helped her with her stuggles if we had known the direction to take.
Once diagonosed, she went through all the treatments. She was 4"9, when diagnosed. Was on hormones for a year. She is
now almost 5"4.
She truly is a beautiful young women. She cheered all four years of High Shcool. Went on to graduate from Nursing School. I must say, she did have a fight to make things happen for her. But she never gave up in what ever she has tried to do.
It has taken many years for her to except TS. But now she has taken ownership of it. She wants to know more about it and understand what it will mean in her life.
The last 7 years have been full of highs and lows. She has good day's and bad day's. We make sure she stays on her med's (hormones and celexa.)
One of the biggest worries for her is having somebody to love her. She does feel flawed (this breaks my heart.)
I think a lot of women with TS can relate to this. But time
and time again, we just tell her "you being you is all it will take." Easier said then done.

Anne's picture

Daughter diagnosed with TS

Hi Lorrie,
I can identify with you about early diagnosis for this chromosomal problem being made as early as possible. My eldest daughter has a mosaic pattern of TS. We had noticed nothing unusual with her growing up to the age of 11 years; she was bright, healthy, and very good at gymnastics and excelled at school. However her younger sister (20 months junior) started to overtake her in height and I became concerned so questioned my General Practitioner about the problem. Upon a visit to an endocrinologist later I was made aware that not enough doctors are recognising the marked signs of the disorder at an early age or at birth. This was my situation. At that stage it was estimated that my daughter would be 4'9" fully grown WITHOUT the administration of growth hormone. First off we needed to prove to the government that there was a growth problem, so she could be included on the government register, this took another year. As she was very mature for her age of 12 years, she was given the option - to use the hormone or not, and she chose to self administer (under supervision) the hormone daily by injecting herself. As we started so late, the hormone could only be administered for approximately 3 years as that was when she stopped growing. I'm pleased to report that she matured at 5' and half ", her younger sisters are 5' 9" and 5' 11" and although I sometimes think she envies their height, she doesn't complain. She is extremely bright and now a qualified accountant turning 30 years this winter. So much for the falsie that her maths skills would be affected! She is in a serious relationship with a nice young man and we have hopes of a happy marriage and maybe there is a possibility of a fertilised egg (supplied by a sibling) being implanted and she will be able to have a child of her own. Keeping the fingers crossed! This is the first time I have spoken/written about this subject publically, and really have huge respect for the young ladies with TS who have taken the time to relate their individual stories on this site.

Sarah's picture

Anne, I was very interested

Anne, I was very interested in your post. My 7-year old daughter was diagnosed with TS at age 5. She is a beautiful young girl and shows no outward signs of TS except short stature, which led to the diagnosis. She is on growth hormones and we're hoping for over 5 feet. I was especially interested in the possibility of your daughter implanting a fertilized egg supplied by a sibling - is one of her sisters willing to donate her egg? Have there been significant issues with this? Have your daughters gone through counseling about this? This seems fraught with emotional issues on both sides and i was just wondering how your family was handling it, or whether it's an issue at all. I am currently pregnant with our third child (a girl) and a small part of me is hoping that this baby may at some point be a possible egg donor for our older daughter. Although it seems very far off right now and I'm sure many technological advances will be made in the meantime, I'd be very interested in your response. It seems there is not much literature out there on this issue. Thanks for sharing your story.

Serendip Visitor's picture

Eggs

Hi Sarah,
My daughter is 6 , I myself, age 36 , will be the egg donor. I have my first session at the fertility clinic in a couple months.
It might
Be another option for mothers of very young one ( mother has to be around 35 or younger )
I hope this will work.

Anonymous's picture

My daughter is 10year old and

My daughter is 10year old and i just found out that she has Ts I so confusses she will see her specialist HG in the next month and heart doctor's after. Any thing for advise please do. thank you so much

Anonymous's picture

Take a deep breath and try

Take a deep breath and try not to get overwhelmed. When we found out 1.5 years ago about our daughter who was then 3 years old, we were shocked and dazed. After a lot of reading and asking of quesitons we decided, she is who she always was, and so much of what she is at higher risk for as a result of Turners could happen to any person anyway. Her life has had 'chapters' ever since and it is certainly challenging at times-- but we move through each as it comes and just thank God for our little girl.

rylee's picture

TS

HI people my name is rylee and my partners name is brittany........... we r doing this science project ob TS and its very interesting.... but we want to know how long people live with it and we cant find it!!!!! thank you!!!!!!!!!!! :)

Trin's picture

ur ques.

it's december so your project is prob long gone but i thought that you might want to know... a person with TS's life expectancy is shortened down 10-13 years.

Anonymous's picture

I assume you are referring to

I assume you are referring to the lifespan and not the duration of the condition. Turner's does not by itself have a marked effect on lifespan, but as you read above, females with the condition are prone to heart and thyroid conditions, high blood pressure and diabetes, and these things *do* affect the lifespan. Every female with turner's is affected differently by it. The average life span is very close to the average lifespan of the rest of the human population.

Ivette's picture

you have it for life its a

you have it for life
its a genetic disorder that stays for life

nita's picture

hello

hello my name is nita and well i was diagnose with turner syndrome when i was 13 i am 16 going on 17 on september. So my experience on having TS is been in other word weird its like if it hasnt sink in yet or its has and i just dont feel it i am taking my growth hormones shots, i also have the heart condition, but on other words i look normal just small i am 4 foot 7 and i am 129 pounds the weight its sort of depressing me and i am taking better care of myself. Also i got surgery to get my ovaries removed my overies were extremely small and if i would left them inside it could of produce cancer in the future so that was a sad day finding out i could make babies the natural easy way. So u could become a mom athough ivf and adopt i am considering adoption. One of my fears is having my life cut short yeah thats it. In school do pretty good in school i do have my struggles just like a regular student. i am a very chill person i was reading that girls with TS have behavioral problems that kind of shocked me, it made me laugh but i was thinking about and its sort of freak me out. So i am hear to just hear from girls with TS and get information to information on supports groups.

Sandra's picture

Nita, thank you so much for

Nita, thank you so much for writing. I've noticed not many women with TS write about how they feel. I know it puts people in a vulnerable place to open up, but it's so valuable to humanity to have a true understanding of what you are going through. I'd rather hear from someone who has the disease - for a first hand experience. I know family members and Doctors all have knowledge and experience but its so different coming from the individual. In today's modern world, women can find out if their baby has TS while the baby is in the womb. More women with TS need to speak up to let the world know what your life is like, so other women are making completely educated decisions about their pregnancies. I hope you will resolve in your heart that God has a plan and telling your own story the good and the bad is critical. Don't ever let people tell your story. You have a valuable life and a voice. Let it be heard.

james spencer's picture

turner syndrome

We are parents of a daughter who is 16 now and she suffer with t.s .Doctors didnt know the real problem as to why she wasnt growing at a steady height.I suppose we could have been abit more on the ball with spotting the problem sooner rather than later.We always thought that she was shorter than her classmates but always thought she would gradually catch up.Especially has i am 5'11 and my wife is 5'8.We realised there may be a problem when she was 5 as her sister who was 4 was already a couple of inches taller than her.It was at this time that Treena was asking questions as to why Maisie had gotten taller than her.We had tests done and the doctor came back with the t.s being the answer.We also had to contend with her brother who was a couple of years younger than Teena that he also started getting taller than Teena.We did all we could for her as she started to get more curious as she got older about her condition.They are all at high school together and Teena is only 4'1 tall whereas Maisie is 5'5 and William is also 5'7.We have had to modernise her bedroom and parts of the kitchen for her.It is pretty expensive but we want to do things to make her comfortable because as soon has she steps outside it is like a land of giants for her.Teena likes it when the new kids start school and just starting out has that way there are some kids short for their age and she helps them.We do support her alot and feel very protective for her safety.I remember when she went out a little while ago with her sister clothes shopping.Teena said all the way round the shop she was starred at and heard people talking about her.I do try to make clothes for her has she cant keep on wearing young kids clothes it isnt fair for her.She also doesnt like it when kids in her classes come right up to her and encrouch her space she says that some kids do it on purpose to make her seem shorter still.I mean she has girls that are over 5'6 and the boys even taller.When she wants to talk to her friends alot do say shall we go and sit down so it isnt too awkward for her.She is coping very well and hopefully will turn out a lovell adult when she gets older.It is good to see her brother and sister do look after her has much as they can.

Anonymous's picture

thats awesome

thats awesome

TS Mom's picture

TS

Girls with TS can have behavioral issues. These issues are generally related to ADHD or Nonverbal Learning Disorder. Some girls with TS have one of these conditions. They are treatable but require a lot of work on the part of the young lady. An excellent resource for TS is the Turner Syndrome Society.

Yes, some girls with TS die earlier due to the heart abnormalities some have. This will be less likely to happen and more girls with TS are diagnosed and the heart abnormalities are discovered earlier and corrected.

Women with TS can have children. Some are able to spontaneously with no medical intervention. Some are having their eggs harvested early and frozen to be used later in invitro fertilization. TS can cause early ovarian failure. I know of several women with TS who have adopted. They have specifically adopted babies with TS.

Women with TS can, and are, successful doctors, lawyers, teachers, mothers, etc. It is not a death sentence. It is not an excuse for failure.

Yes, some have problems with speech. Early intervention can help deal with that. There can be hearing problems, kidney problems, feeding problems, cardiac problems. But, there doesn't have to be.

Girls with TS exhibit a whole range of signs and symptoms. As I tell my daughter, TS is not an excuse for failure. It doesn't not need to run or control her life. She needs to keep it in mind but not become the syndrome. The syndrome is part of who she is. It is not the entirety of who she is.

Height is important. My daughter is not just on growth hormone to be taller. It is also for stronger bones and to keep from having early onset osteoporosis. Estrogen to begin puberty is important not for social reasons but because it is important for heart health and to prevent osteoporosis, among other things.

She will need to watch for things like diabetes and watch her weight her whole life. Ten extra pounds isn't much on a person 5'5". On someone 4'11", it is much different.

TS isn't a cause for sympathy or pity. It just is. Women with TS need to understand how it affects them and take steps to counteract those effects. That's it.

I may sound harsh but the last six months have been an eye opening experience for me. We just began this journey then. We've been to endocrinologists, geneticists and psychiatrists (medication management). We've gone for x rays and blood tests. Yes, I say we. I am on this journey with my daughter. Right now, I am living it with her. My daughter felt relieved when she received the diagnosis. She felt like she was born under and unlucky star before that...scoliosis, flat feet, bad eyesight, ADHD, urinary tract infections when she was younger, petite (we have always preferred the term "compact and environmentally friendly"), delayed puberty. With the diagnosis, everything fell into place. We just had to make sure there weren't other issues involved. All I can do is give her a firm basis on which to build her life. But, then again, that is all any parent can really do for their child. My daughter is not "my daughter who has Turner". She is my daughter.

chelsey's picture

21 and no symptoms

I'm 21 and just learned that I was diagnosed with mosaic turner syndrome before i was even born (NO ONE EVER TOLD ME, i guess my family didn't feel like it was important enough). i never took growth hormones, or estrogen and started my period naturally at twelve. I am 5'5" with no other symptoms. Does anyone else have a similar story? all other websites have almost the same exact information!

Serendip Visitor's picture

My sister was 19 when she

My sister was 19 when she found out that she had mosaic turners. She is now 27 and her only symptom is that she was not having regular periods and her height. She developed normally. She is 5'2 and the rest of our family is very tall. My sister was never on any time of hormone shot, but does not take calcium orally to assist her with strengthing her bones.

amanda's picture

hi my name is amanda i was

hi my name is amanda i was born with ts and it sucks i take hormone shots and puttung on patches so i can develope...i undestand what ts people go through...but i have one qoustion...does ts get worse

Anonymous's picture

no it gets better you just

no it gets better you just have to learn to deal with it i know how it feels

Anonymous's picture

hello

hello my ame is heather and i am 22 i was also born with ts and i just wanted two let you know no it dont get worse but you do have a lot of ne thngs to go thow and it is hard but it will be ok you can email me if you need some one two talk

Hey's picture

Hey.I am 18 and I am haveing

Hey.I am 18 and I am haveing a TS.I find that we are not that different from the other persons.Its even strange for me to say that "we" are not like the other persons.Calling us different is a big joke for me because most of the time I dont feel different to be honest I feel different very rarely.Its so wierd for me to hear how people are treating us like its a rough disease and pityng us but really it isnt.I found its rather sweet that we are small.But what the heck.If you think there are many people who are same height .I personaly am 1.48 m and hopeing to get at least 150 cm because im still on medications.I dont think about my height and everybody who knowes me tells me that your height is not a problem because it really isnt that small and that i am one sweet and careing person and thats all what matters.So I never had a very big problem with my height.Whats the point worrying about things that you cant change ?Ofcourse there are times when i wish that i could be a little bit taller but should i stay in my room and pity myself?I just dont get it when people are doing this.And mentaly im very fine.Some areas Im even smarter and better then my friends and I understand people very well and I love my friends.My heart is thank god fine altough first they tought that its sick but the proffesional doctor told that its fine and why i even came there what was my problem and those doctors who send me there must me out of their minds even i have TS i have a good working heart.After that doctor visit I laughed and thanked god.But I do some sport to keep my heart and body healthy.So I just have a normal life. Perhaps the most roughest thing is not haveing a period.But as i have heard there are medication for that.I would like to ask you guys are those medication worked with you so you could have a period?This is the only thing that is missing to feel totally normal.I have takeing a ostrogen and it had worked pretty well.Hope that the other medication also works.And I dont feel so bad not haveing a child of my own.Knowone should not pity herself for not haveing a change because how many normal people are in the world who cant have children also?A lot of.And if you have a man who loves you he wont leave because of that.I hope that i find someone like that.So wishing all the best.And remember dont feel bad about yourself about your height and not haveing children and most of all: Dont never let the other people pity you about your situation because you are a normal person with some exemptions.But dont let those get to your head because if you think everyone can have a small height,everyone can have a problem with haveing children.So why should you feel a lot more different?There are no reasons for that.Live a happy and normal life.:)My englsih grammar is not so good so forgive me if there are mistakes.English is not my native tongue.Wishing all the best and reach out for your dreams.

Anonymous's picture

turners syndrome

I started my period around 6 months or a year after beginning estrogen. I am concerned that you are 18 and not menstrating. Please check with your doctor or get a second opinion.
thank you.

Michelle2's picture

My daughter had TS...Coraotation of the aorta

I am a proud mother of 3 children... My first baby born Aug 2006 (our daughter) named Kierstyn sadly passed away because when she was 9 days old she stopped breathing in the emergency room at the hospital for 10 mins, unknown to us before I had her that she was going to need heart surgry because of having TS (coraotation of the aorta).. Kierstyn had no signs of TS when she was born so it was a shock to my husband and I, we thought we did something wrong but soon found out that it was just a fluke..
From all the dr's they kept telling us Kierstyn is not getting better but worse... because she was not getting any better after she was in the NICU for 5 days of her life is when my husband and I had to make the hardest decision of our lives and let Kierstyn go back to heaven..
I like to think she is an angel that was sent from above to give life to 6 other babies because we donated her heart vessels I know I was very lucky to be her mom for 2 wks and enjoy to talk about her to others...
I have two other children.. darling little boys - Brett 22m and baby Darrin 16wks
I am learing to except that Kierstyn changed my life but for the better, to teach me so much more than I never knew before..
At times, I do get frustrated and still have my bad days but at the end of the day can find peace in who I am and what my children have given me..
I enjoy reading about other girls that had TS because it give me a glipes of what I could of had..
I am content with my life and wouldn't have my beautiful little guys if I didn't lose my daughter because All you can do is move forward..
My daughter will always be apart of me !!
Hugs,
Michelle

Cheryl's picture

My daughter had ts

I just came across your story and it brang me to tears. I myself have a daughter but my story is a little different from your she is here with me now. A very attative 8 year old child who wants to be a teacher when she older. I have gone though alot of rough roads to get to where we are today. She did have heart surgy when she was 4 months old corration of the aorta.She has too vales not threee like us. And we just keep an eye on her but she knows everything and im glad she understands. But im so glad you got to have to loving boys and thery can remember there sister in a great way!!!!!

amanda's picture

ts

ummm....i was born with turner syndrome and i had sighns when i was a baby my mom told me that one of my foot was really swolen...and now im 16 4ft9 and i to had to have heart surgery yes it sucks but proud to have ts

sonya 's picture

ts

did you take growth hormones? it has taken me 3yrs. to finally find out that my daughter has ts among other things that do go with ts. at first the dr. were telling me that she would probably be 4ft. 8 without gh but now they are saying that she will probably be only 4'5 or 4'6. i'm considering giving her gh because i don't want her to be self conscious of her height. they expect her to only be 4'11 on gh. i don't really know what to do. she means the world to me and i just want to do what is best for her.

Anonymous's picture

In response to whether or

In response to whether or not you should give your child growth hormone shots...well my daughter was diagnosed with turners syndrome at the age of 3 when I had to keep telling my dr there is something not right. I did all the testing with the heart, kidneys, etc and everything is fine. They told me that she would only be the most 4'7 without growth hormone shots. The reason I decided to do the growth hormones is because of myself...I am almost 4"11. I know being short seems like its no big deal, but some things have been very frustrating for me because of my height. That is why I decided to give my daughter with Turners the growth hormone. If things have been difficult for me at 4'11, then I am sure it will be worse for her at 4'6. I have been giving the shots to her every day since she was 3 and now she is 6. Yes, there are some days when I wish I didnt have to do this, but I know that she will thank me later in life when she realizes the choice that I made. We love our children and just want what is best for them. Good luck!

Anonymous's picture

I am 31 female with Turner's

I am 31 female with Turner's sydrome. I am pretty normal and healthy except for i am overweight and have high blood pressure. I am concerned about the bad effects of being on birth control pills. Do I really need them now? Hopefully someone out there knows what i am going through. feel free to comment

Anonymous's picture

turners syndrome

Please talk to your doctor about a different kind of estrogen. and progesterone I felt terrible on premarin. There are
many different knds; pills, patches, even lotions.
Thanks, Mallory

amanda's picture

umm hi i have turner

umm hi i have turner syndrome but i heard you cant get pregent so if you want stop taking birth control

Anonymous's picture

Turners syndrome

I am doing a research project on TS and I have just read all these amazing stories. I am so inspired that so many people are living a normal life with TS and not letting it hold them back. Although I do not know you, I feel proud of all of you people who are proud to say that you have TS and that your beating it.

Thankyou so much. Have a wonderful life.

Anna Kovacev's picture

Turner's Syndrome

Please, I have been on the Internet and I cannot seem to find the answer to how long the person can live. I am aware that some may live into their late 60's however, it is the one's with heart problems that I am interested with. I heard the Mortality rate could be between 40 and 50. Is this true???

Anonymous's picture

interview

I am doing a project in biology where we need to interview somebody with the disorder we chose. Can somebody hook me up with a friend or relative with Turner Syndrome?

Roxana's picture

my heart is breaking

hi,
my name is Roxana Musche and i am 19 years old.i found out when i was 18 that i have TS.....its been really hard on my because as we all kno haveing TS means u cant have children,and i want a baby more then anything in this world,i know ur thinking(but ur only 19...your so young how can you be ready for a baby)the thing is.i love children and my heart is breaking over the fact that i cant have one of my own,i thought the pain would go away and i would learn to be ok with it over time.but the pain growns more everyday its become all i think about,i geuss i dont kno how to deal with it.no one in my family has thins,no one i kno has this so i feel more alone then ever.......please help me

IccleAmy's picture

Hi

Hi Roxana; my names Amy, I'm only 21 with TS and feel the exact same way as yourself. I've known I've got turners all my life but dispite having all this time to come to terms with it I still imagine a flutter in my stomach and hope its the movement of a child. Crazy I know, but its not something you will ever get over, you may as well know that now. Finding comfort in the fact that you can still carry a child via IVF or adopt, knowing you can still be a mum - thats all that gets me through day to day. After all what is blood but thicker than water? I know for sure that the love I give my children one day will be a million times thicker than any blood, be they adopted or otherwise. xx

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