Turner's Syndrome-A Woman's Disease
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.
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!!!!!!!!!!! :)
you have it for life its a
you have it for life
its a genetic disorder that stays for life
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.
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.
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.
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!
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.
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
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.
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.
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
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!!!!!
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
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.
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!
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
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
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
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.
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???
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?
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
theres always in vitro
theres always in vitro fertilization
I feel the exact same way you
I feel the exact same way you do. A family is one of the most improtant things to me- I am now 28 and am still burden adn sad aily I cannot have a child of my own. The social system has made it tough to adopt but we are hoping to someday.
Really unless you are a luckily one who spontaniously gets preganant the only options is adoption or invetrofertialization.
I wish you the best of luck! I wish i knew what tos ay to ease your pain but I dont. Im going through the exact same thing.
Don't worry/There is hope
Hi,Roxana. My name is Giota and Iam a mother of a TS child. Although my husband and I have no problem we have spent 5 years trying to have a baby...Can you imagine going to all those doctors, having operations just to find out that you for an unknown reason can not have a child...Thank God, I have my little girl now. I have visited many doctors that are specialized in TS and they all say that science has so increased that nowdays many women with TS can be mothers (English is not my native language and I can not explain you the way) but do not lose your hope. You can visit the right doctor and everything will be explained.After all, remember that you can always adopt a child (this is what I would do if I tried for 2 more years with no sign of a baby...
Hello! I am a 30 yr. old
Hello!
I am a 30 yr. old with turner syndrome, and I can't have kids either. I am married to a good man, who loves and accepts me for who I am...and the fact that we can't have kids. I also have 3 nieces and a little nephew. I wish I could tell you that was enough to heal my broken heart over not being able to have my own, but it's not. When I watched my brother and sister in law have children, it broke my heart. I love them all, but at the same time, I hurt. I know your heart in broken, too, and all I can tell you is to take it one day at a time. Live your life to the fullest, have friends, and boyfriends. Live laugh and love,
and pray....
TS
Hi Roxanne. My Name is Denise and I am 53 with turners.I found out when I was 15. Like you I wanted children so bad I love babies. I have over two hundred dolls and I adopted a boy with Autim. he is the love of my life.I have struggled with meatal and lots of phyical problems. It is a very hard for anyone to understan what we are going though. If you would love to chat with me my email is Polleyplayland@msn.com I do not know anyone personally with TS but it would be nice to exchange letters. Please let me know okay In hope a friend Denise Polley from Washington State. Chat soon!
did u already talk with ur
did u already talk with ur dr, because im almost sure that there are options
help please
I am trying to find a way to explain Turner's Syndrome to a little boy who's infant sister had Turner's syndrome and did not live through birth. He is really struggling with the grief process and often says he wishes she was here. His parents want him to understand the pain that she would have suffered if she would have lived. I've searched the internet for advice on how to help him understand his sister's condition and the complications from it. So far my search has not been helpful. Can someone please help me?
Do u i have TS
I have been taling groeth hormone for the last 6 years and i stop about 2 months ago. i had to go to and endocridoligst doctor or w.e ther called every 5 months to check my growing. I had some of these symptomes like blutering things out loud, low hairline, broad chest and i am pretty short i am like a quarter inch to 5 ft and i am always the shortest one in my class. i got my period when i was 13 so i didnt get it late. When i was tested the doctor never said i had a TS syndrome but that i had to take ingections everyday except fpr saturday and that i would grow only to b 5 ft. i thought that this was ok beacuse i liked being short but i was just wndering if i had TS.
I have TS
Hello everybody ... my name s Tereza i was diagosed with TS at the age of 12---im 33 year i do take the hormonal pills nad I use to take the shots Im 4"8 did have heart problem --- got surgery when i wasa 12.I did have a hard rtime in school.. but that not a big deal --- I learned to cope with it
let me make this short and sweet Turner Syndrome is NOT a disease it is a diorder !!!I dont have a behaviral problem I mean I do have my moments but that with the peopple that mess with me.
I graduated high school in 96 ---- i did have problems with math --- I went to CHI its a school were i went ot get my medicalassiatnat degree --- i wored in a nursing home --I was a manager ---I also worked at a collection agengy --- now im back in community college...im working to get my LPN degree -- its taking me a while.. but i'll get there!!
I have to say that my mother is my hero .... when I use to cry and said I dont wanna go to school-- she would say you going to school --- thre nothing wrong with ypou you only short ... she said " you have a brain, 2 legs, 2 arms .. you going to school".... when i use to sa no u cant do this -- she waould say -- "Tereza yes you can... n you can do it better".. my mother wa the one who was 1000% behind me ... i did struggle a little ... but she was always there for me.
I been through a lot ... good and bad ...What i wanna say to those parents push the girls.... is they say no i cant ... tell them yes they can.
If anyone want hhave any quetions please dont hesitate to conctact me!!
Tereza
I have a 2 yr old with TS.
I have a 2 yr old with TS. She is having issues with speach. I was just wondering if any of you have any expirience with this. She has the low set ears and a high pallet and split uvula...If any of you have any advise please let me know...thanks
ts disease
i am inquiring whether a young girl of 19 is able to become pregnant with having ts disease, as she has met a young gentleman and is thinking of marriage. yours sincerely chris
Turner,is it a male or not male illness?
Hello,I am a girl with TS,I have some friends one of them claimed that there existed males with TS due to the fact that it exists males with lacking Y cromosone.
If males can not have TS what is the diffrence,and why?
Wendy
I have been working on this
I have been working on this report for quite a time, and i cant belive ive never heard of ts before. when i saw turners syndrome as an option for my report, i thought it was one of those wordy uncomprehensible genetic disorder i would never understand. reading all of the blogs has helped learn more about ts than if i had gone to webmd or something like that. your stories are admiring, and im so glad you are all so positive. i would be a pessimistic person if i had ts. having learned about this "different" sickness has made me understand that with or without a disorder, we are all simply normal. thanks so much for the inspiration you guys. take care and best wishes!!
Just a Girl doing a Science Project On Turner's Syndrome
Wow, i loved this article on Turner's Syndrome. I have learned a lot about it and i feel very touched. I read many of the comments that others have posted and all of you women have inspired me. Im just 12 years old and already matured *whimpers* but i have learned that a couple changes in your body doesn't really change YOU and who you are inside. All of your attitudes on life are so positive- i support all women with Turner's syndrom out there. Thank you for the article ( i have the chance of getting an A!!!) and thank you for you comments too. They were all so nice.
Thanks again, A happier girl
Student with TS
Hi everyone..
Im 18 and am working this year at a preschool.. One of the kids I teach has Turners Syndrome and I had absolutely no idea what that was.. Shes 4 and a wonderful, happy and lively child and I was always concerned about her because of the Turners. After reading this i just want to thank everyone for adding their experiences because I now know she can live a perfectly normal life. You women and girls really are amazing and I really do admire you for your positive outlooks and attitudes on life!! From being totally clueless to pretty well informed and feeling better about this little girl i just want to say thanks again ladies :)
My consultant thinks i have ts and she didnt even examine me
I haven't started my periods yet and i'm 16. Im 5"2 and a half, Have normal breast development, no webbed neck, no broad chest, very slim fingers, slim feet, no behavioural problems and am aiming for As in my a levels. My original consultant examined me down below, weighed me, measured me and said theres no problem, im just a late starter, but she sent for blood tests anyway to put my mind at rest. My results came back and i had a high fsh or something like that and the new consultant who didnt even examine me said they wanted more blood tests to check for TS. she didnt even examine me, check my height or tell me what ts was so i began panicking.
Im fairly certain i don't have ts, (im on medroxyprogesterone acetate for the next week to bring on a period)but after reading all of these comments, i can't say id be particularly heartbroken if i did have it. You girls are an inspiration, and have really put things into perspective.
Thanks. :)
Grand daughter with Turners Syndrome
Hello, I am a grand mothter to be of a baby who will have Turners Syndrome. Unfortunetly, my precious little grand daughter will not make it to term because of some major heart defects. She in 20 weeks in utero now. But my son and my daughter in law would like to meet someone with Turners Syndrome to know what a wonderful life they will sadly not be able to have with their daughter. and to better understand and talk with someone who is living with Turners Syndrome. i believe that it will help them with closure when my grand daughter passes on.
If you live in the Albuquerque, NM area, please contact me so that we can talk.
Thanks for listening.
ur Grand baby
I was saddend to hear your story, mostly because it took me back to when I was in that situation. My baby was also diagnosed in utero and had all the "classic" symptoms including a fatal heart issue. After I refused to make a trip to n.carolina because they would still performed an abortion despite 24wk gestation, My husband and I were advised to be prepared and plan to plan the funeral in advance so it would be easier on us. Needless to say the love for my baby and extreem stuberness would not allow me to do this....the pregnancy really took a tole on our marrige mainly do to our differnces in the greiving process (men and women truly do differ when it comes to this)...Long story short our angle was given to us 9/25/06 And her with a touch of stuberness from her momma and a dash of fistyness from her daddy and a watchfull eye from above, she has weathered surgeries, overcome the satistics, and and along the way has gained charecter and a personality that trully leaves a lasting impression to those she meets...The world had better watch out for this one!! She truly has a divine purpouse...So from a mother first and a Registered nurse second Medicine can have its theries and satistics....But if it is ment to be through faith and prayer a larger hand will prevale....
Sorry
im so sorry to hear about your would be grand child. i hope somehow that child finds a way to make it through the hardships she is encountering. best wishes
I don't know what the
I don't know what the average height for women is here in the USA, I was amazed to find out that those of you with turner struggle with height issues when some of you are 4:8...I guess it's because you're white...I have a mom who's 4:7 and a grandma who's about 4:4. I am 5:45, becaue my dad was average 6:77. So anyways I loved reading all your comments
may our God Jesus bless you!
behaviour
some TS girls can have behaviour problems but many non TS girls do as well.. i think TS girls get frustrated as many do not understand them.
My daughter was diagnosed at birth due to puffy hands and feet and a high arched pallet. from the start she had problems growing just gaining 1oz in the 1st 6 weeks of life. she fell off the growth charts at 6 weeks and it was only 2 months ago at the age of 11 3/4 she finally hit the bottom line on a "normal" chart for her height.. she's now almost 12yr old and 4ft 3" tall. she started growth hormone aged 4yrs and at 11yrs 3 months she started on estrogen (HRT)that was 7 months ago and she's just starting to show body changes..
behavior wise i'd say she's easier than most her age but i feel that is just her personality more than anything else.. medically she's got off with a lot she had feeding problems till the age of 3yrs, growth problems from birth, she walked aged 17 months and speech was very well developed.. she recently done her 11+ school exams and passed at the expected level for her age. she has a reading level 2 -3 yrs above her age.. she has troubles with maths but copes at the ecpected level for her age.. singing voice is adorable (proved that at conferance)
some TS girls do appear as if they have a mild form od aspergers so that may account for some behaviour problems.. and also remember many TS girls are pre mature so some problems may be linked to that more than the TS
My Lil Angel
My daughter was diagnosed with TS at ten years old. I had no idea, although she was shorter than her friends (but i am only 5ft 2"), it was only picked up on because she had tonsillitis and we saw a new GP who thought she was too short, so referred her to a paediatrician. She shows none of the physical traits of TS although she does have a squint and has had two lots of grommetts and had her adenoids removed (long before being diagnosed).
Looking back when she was a baby she did have some signs of TS, i.e. projectile vomitting, difficulty with solids, terrible sleeper, clumsy toddler etc. She is now nearly 15 and is 4ft 10.5 with growth hormone and is still growing, she is on estrogen.
She copes great at school and has lots of friends. We have just come back from the TS Conference and I would defintely recommend going to one if you have the chance, as my daughter has some fabulous friends she has made there.
She has lots of confidence in herself and doesnt let anything get her down. She is just like any other teenager, argumentative, stroppy, knows it all etc.
She is my true lil angel!!!
I am a college professor who
I am a college professor who just found out about a student's TS (through an essay she wrote). My first reaction was to cry...for her (the sterility made me especially sad--she's so young!).
I also cried from guilt, because I have been unintentionally impatient with her. She is sweet and always has her hand raised. Quite often, her eagerness overwhelms the rest of the class, preventing others from participating. My frustration, I fear, has been evident. Also, I am hard of hearing, and she can be difficult to understand at times.
Thanks to all of you for sharing your experiences, for helping me to understand. This has been a good reminder to exercise patience and tolerance, even when you don't understand why someone acts in a particular way.
A Chastised Prof
24 Years Old With Turners
I was diagnosed with TS when I was maybe 2 or 3 (according to my folks), and started growth hormone therapy at 6 years old. Being short is the main hurtle I've had to overcome. At 5', I'm taller than some TS women, but still much shorter than average, and will be even shorter than average as I grow older, but no taller.
Another hurdle is not knowing anyone else with Turners. I think if I had it to do differently, I'd have asked my parents to help me find another TS girl to connect with when I was diagnosed (something I would recommend to any TS parent). It might have made the getting along easier. But as I grow older I am starting to reach out myself, in my on time.
I guess another hurdle would be having to sort of educate some of the doctors I see about TS. Some have never heard of it.
Like others have stated before, TS does not cause behavioral difficulties, and it is most certainly not a condition I 'suffer' from! Just something that means I don't have a far reach and I have to keep a close eye on my health.
I don't have a talent for math!, but have a unquenchable thirst for knowledge and read all the time. I love science and art I am working on going back to school to study Art History and dream of going to Italy to study abroad one day.
Turner's is a part of my life, but it's certainly not a hinderance or something I think about constantly outside the doctor's office. But of course, everyone's journey is different and TS will effect likewise.
Peace,
Erin
My Healthy Daughter with TS
My 15 year old daughter was diagnosed at 12. She had no characteristics of TS other than she was shorter than her peers. I would always mention to our family Dr., weather it was a well check or she was sick, that I was concerned about her height. He would always say, "she just hasn't hit her growth spurt yet". Finally, at 12, he said it was time to do a skeletal xray. Other tests followed and our TS journey began. She endured two years of growth hormone injections and reached her full height of 4' 10 1/2 (The 1/2" is very important). Fortunately, she did not need estrogen to go through puberty. All of her medical tests indicate she has no organ problems at all. She excels in her honors classes in school, including math and is loved by all who meet her. She knows that diabetes and/or hypertension can become an issue so she watches her weight and is very physically active. Early diagnosis is very important. If your daughter's Dr. doesn't isn't listening to you if you have concerns, challenge him/her or go elsewhere. Best wishes to all.
Wonderful Daughter with TS
I started reading this article and did not want to read the entire article, but my husband encouraged me to do so. I am now glad that I did and read the comments below....which I got more out of. We have a 27 year old daughter with Turner's Syndrome, who was diagnosed at birth. Our daughter had the web neck, puffy hands and feet and other situations. She had plastic surgery on her neck at 3 years old and other various surgeries including jaw surgery. Our daughter is loved...not spoiled. We never allowed her to use her TS as a reason to do poorly in school or in her behavior. Math was a difficult subject for her, but she was blessed with a 18 month younger brother who advanced in math in school and was able to help her. She graduated in the top 10% of her high school, went to college and got a BS in Psychology and has a Masters in Education in Guidance and Counseloring. Some of her biggest struggles have come in the work place and discrimination for having differences due to TS. I would encourage people to not be judgmental and realize just as people without TS we are all different.
ts
My friend just gave birth prematurely (9 weeks) to twin girls. That is struggle enough, but one girl may have turner's syndrome. This is evidenced by some physical traits she has. The comments coming from girls that actually are afflicted with Turner's are wonderful. These are the women that will help to give a brand new mom insight into her daughter's future! Thanks for clarifying so many situations, and assumptions/perceptions that people have. I will check back frequently. Very useful comments. Very real.
SPECTRUM DISORDER
I think that the important thing with TS is to recognize that it is a spectrum disorder and so everyone is different. I have a sister who is 38 years old and has had severe behavioral issues her entire life that is related to the TS. She has never been able to maintain a job and I believe that the behavioral and emotional immaturity are the reasons. It is so wonderful that many women are not affected in this way who have TS, but it is more challenging for people like my sister because she really needs to be on disability as she has been unable to support herself her entire life due to difficulties with TS. I just feel like it is a very misunderstood disorder.
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