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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.
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Comments
Yes and no. You can certainly
Yes and no.
You can certainly have xo/xy and there is no definitive reason to presume xo is a lacking x or y specifically as the sexual phenotype default is female.
Hey...
Hey, everyone. So...I was diagnosed with Turner's at age 10, I think (not quite sure; and I'm now 15, BTW). None of my friends know; they just assume that I'm really short, somewhat socially awkward and a bit of a 'late-bloomer', so to speak. However, I am a happy, vivacious girl who really enjoys the life she lives. I have a small group of friends but I'm an introvert by nature so I'm okay with that. School isn't really much of a struggle for me academically; I make some of the best grades in my grade and I enjoy reading and (occasionally) writing as hobbies. I participate on my school's academic quiz team and excel at it, playing on the varsity team as a freshman. (If any of you're curious as to what quiz team is, just Google 'NAQT')
As for the physical side, I didn't start menstruating on my own and I'm pretty short, even with growth hormone injections. I don't have the fat rolls on my neck, or puffy hands and feet. Weight is a bit of a struggle for me due to my height (and the fact that I have what is probably the biggest freaking sweet tooth known to mankind). Height isn't too sensitive an issue to me, however, since my mom (non-TS) is actually an inch shorter than me and short stature is common on her side of the family.
I hate having Turner's, though...I don't care if I'll be able to lead a (mostly) normal life, I'm a 15-year-old female American teenager and I can't stand feeling different :( I just want to be socially normal, you know? Any other girls feel this way?
Basically, I'm just looking for someone who can just give me advice on how to deal with social situations in general. Anything is appreciated and I would prefer that it come from another girl with TS. Thanks :)
I know exactly how you feel.
I know exactly how you feel. I'm 13 and I have turners syndrome and I am 4'7. All my friends are taller than me and only my closetest friends know. I am the same with education I don't struggle at all. I actually have never gotten lower than a 3.6 GPA. I have never gotten a C or lower in my whole life. My hands and feet aren't poofy and I have a normal neck. I do have a rather large chest though. I take shots too but they don't help very well. I feel the exact same way as you. Just wanting to be normal.
Driving
My daughter has turners and is now 20, a sophmore in college, and is having a very difficult time getting her drivers license. Does anyone have any suggestions on how we can help her?
Driving reply
Read this & had to reply! I'm 30 w TS and just recently got my license. I got my permit in highschool and did okay but didn't practice much then got into an accident shortly after (not my fault) then completely stopped altogether. Between the accident and the difficulty driving w TS I decided I was never gonna drive. It bothered me so much that all my friends were driving but my Mother didn't want to things uncomfortable for me with me driving so she never pushed me to drive, I think a lot of it was she was just nervous & scared for me to be on the road. Flash forward years later, I met the love of my life at work in SC, well he's from NJ. He ended moving back to NJ where he's from and we did long distance then decided to get engaged and buy a house...in NJ! Well the driving situation then became a SERIOUS situation. I was so nervous, how was I gonna get to work/get around? I was so use to my Mom, friends, and coworkers taking me to work. Well that's when I had no choice but to get out there again and DRIVE!! I was sooooo scared it was ridiculous! I had little no no experience past drivers ed in highschool!! Luckily my fiancé was so patient and supported me. He took me to work was was very stressful considering he had to go to work too, and helped me practiced and learn to drive again. It took me a few times to pass my test and let me tell you the times I failed I was beyond upset but I kept going back til I passed!! The feeling of passing and being able to take myself places is the most amazing feeling in the world! Don't let your daughter give up! PRACTICE PRACTICE PRACTICE AND MORE PRACTICE!!! If I can do it I think anybody can!!! Good luck, thoughts are with you and your daughter!
Heart attack
My sister has TS. The family including parents did not know about TS as we grew up in an undeveloped country. She is now 62 years old. She has suffered a lot of emotional abuse from the family and outsiders because of her different look and behavior and our ignorance. She is very smart and itelligent inspite of her problems. She is now laying in bed for over 5 months after a heart attack and an open heart surgery due to a ruptured aorta, in a catatonic, half coma state. Not sure what to ask you guys, but any comments are welcome.
insurance
Our daughter, Rebekah, was diagnosed with TS when she was 16. She is now 20 chronologically, but much younger socially and emotionally. She is learning to drive, but has difficulty staying focused. She is also (praise God) 5 feet 3-1/2 inches. When she began growth hormone therapy, she was 4 feet, 10 inches.
My question is: does anyone know of a good medical insurance that is relatively inexpensive? My husband served in the military, and she is covered under our policy until she turns 21 or until 23 if she goes to college (which she is too immature to do right now). I know she'll need life-long care, and I'm not sure how we're going to do that for her. She presently works part-time at McDonald's, and has no aspirations toward doing anything that would increase her salary. Thanks for any advise.
Turner Syndrome
My daughter has TS she is gaing weight so fast I'm not sure of this is part of but she seems to be so angry at me all the time I'm mean I'm a single parent and I work a lot and there's not much left over to buy here neyyw pants very two weeks. But just about to go insane I can't make my beautiful daughter happy and she seems to have me at time I'm not sure what I'm doing wrong. The kids in school make fin of her this brakes my heart and the teacher always say I don't see that... And I'm like well you are missing all this and now she hates school so what do I do to help my daughter without insulting her ?
your daughter
I am a mosaic turners. turner girls are more susceptible to conditions like Hypothyroidism , aortic dysfunctions, kidney disfunctions. You need a team of great doctors to take care of these including an ednocrinologist who is experienced in treating turners and mosaics. for her u will need a non codenscending therapist who will appeal to your daughters nature. in order to afford all of this, you will need a great job that provides great medical coverage for in and out of networks. I work for one that will give you great co insurance (I can't say the name but I can hint that were on every corner very popular and make tasty coffee drinks) when you figure it out look up the benefits youll see why. you need to do this fast . explain this to your daughter as if this not because she is fat . this because something else in her body is causing her to be overweight which is dangerous. this will take the blame off of her or you and allow her to help you ,help her.
She is angry because A) she doesn't have anyone else but you to take this out on. She loves you and whether or not she knows it, your the only one who can help her.
B) Turners syndrome is controlling her and she doesn't know how to control" IT". Shes frustrated because she thinks this is her fault and she just wants it to stop so she can be happy. Like everybody else has a right too.
I HIGHLY DISAGREE WITH HOME SCHOOLING! NOT ONLY DOES THIS AFFECT HER FUTURE BUT ONLY ISOLATES HER FROM POSITIVE PEERS THAT WHICH IS IMPORTANT FOR IDENTITY . TO ISOLATE HER NOW WILL TEACH HER THAT ISOLATION IS THE ONLY SAFE WAY TO FEEL HAPPY WHICH WILL CRUSH HER AND LIMIT HER ALREADY LIMITED LIFE. TAKE SOME TIME AND TALK WITH YOUR DAUGHTER ASK HER WHAT SHE WANTS OUT OF LIFE . ASK HER WHAT SHE WANTS TO ACHEIVE. LOOK INTO TRADE SCHOOLS TO HELP HER DEVELOP SKILLS THAT WILL PROVIDE RESOURCE FOR HER FUTURE(AS IM SURE YOURE WORRIED ABOUT) MAKE SURE SHE KNOWS SHE HAS THE CAPACITY TO BE SMARTER THAN ANYONE ELSE AND MORE BEAUTIFUL . ENCOURAGE HER CREATIVITY. THE REASON I MENTIONED TRADE SCHOOLS IS THAT SHE WILL BE ABLE TO DO SOMETHING AND EXCEL AT THINGS AND HAVE SOMETHING GOING RIGHT IN HER LIFE WHICH IT SOUNDS AT LEAST IN HER MOND NOTHING IS. TAKE A YEAR AND LET BE DEDICATED TO FIXING THE "THYROID" PROBLEM IN A HEALTHY FASHION, AGAIN MAKE SURE SHE KNOWS ITS HER THYROID NOT HER !
IF IT TURNS OUT TO BE THYROID, PLEASE RESEARCH THE DRUG ARMOUR. IT HAS HAD MORE SUCCESS IN TREATING PATIENTS WHOLELY RATHER THAN FRACTIONED LIKE YOULL SEE IN SYNTHROID PATIENTS PLEASE LOOK AT STOPTHETHYROIDMADDNESS.COM NOT EVERY DOCTOR WILL PERSCRIBE IT . SOME OUT RIGHT REFUSE. OTHERS WHO HAVE SEEN IT MIRACULESSLY CURE THEIR PATIENTS WON'T HESITATE THEYLL SAY THEIRE IS NO PROOF THAT ITS BETTER THAN SYNTHEIC THYROID , BUT YOULL SEE THE PROOF IS THE PEOPLE WHO HAVE TRIED ARE BACK TO NORMAL LIVES HEALTHY WEIGHTS THATS PROOF ENOUGH .
GOOD LUCK TO YOU AND YOUR DAUGHTER I WON'T LIE I AM A MOSAIC AND IT WAS TOUGH FOR ME . ITS GOING TO BE A BUMPY RIDE. BUT IF YOU CONTINOUSLY WORK WITH YOUR DAUGHTER AND NEVER GIVE UP, YOU'LL PULL THROUGH JUST FINE!
-L
Armour Thyroid Med
I don't have Turner's syndrom, but I do have a low functioning thyroid. There are two major hormones the thyroid produces--T3 and T4. I took Synthroid and the doctor kept increasing the dosage to get better results. An integrative doctor (a regular and holistic doctor combined) switched me to Armour Thyroid, which is a natural thyroid hormone. On Armour, my levels of hormone are great. The body is able to use the natural thyroid hormone better, and both T3 and T4 are improved. Synthroid isn't absorbed as well and only helps one of them (I think.) If you are on Synthroid, please go to your doctor and tell him about Armour Thyroid.
daughter
Hello,
My suggestion to you is to homeschool your daughter. Even with working a full time job it can be done. I have done it. Take her away from the cruelty and people who do not understand the pain she is going through and keep her with you.Let her know how special she is over and over. I am 61 years old now. I suffered all through school and after. People look at me like I am a freak. I cry inside and out. As far as clothing goes. I shop the resale market and pray that I can find a couple pair of pants that someone has already hemmed. Just do what you can do to ease her pain. Remember that anger is only hurt turned inside out! I hope these suggestions will help you and your daughter.
Hey Sandy. I actually have
Hey Sandy. I actually have Turner's Syndrome and went through the same things when I was growing up. I am now 27 and I have turned out just fine =). All you can do is be patient with her, let her know she is beautiful and accepted by you, and talk to her about everything. Make sure both of you really research the disease and understand it...both of you. If she isn't aware of the disease and the issues she could struggle with because of it, she can't work on them. As far as the weight gain, make sure you have only healthy foods in the house and are cooking healthy things. I know you work a lot but make that a priority. Also, maybe see a nutritionist who can help? Especially if she is aware weight gain is a struggle for those with Turner's and understands she has to work on it, it won't be as insulting. Start early and get control of it. I know it is hard but just love love love on her and I promise she will make it through. Being aware of the disease will be more helpful than not for her, even if she is still young. I did not start learning about it until later in my life because I think my parents were trying to protect me but it would have answered a lot of questions for me when I was younger. I am still living a completely normal life and happy. She will be okay =) hang in there. Hope this helps!
Turners-My daughter
Hi
I am so scared of what lies ahead for my daughter. She is 11 and is having testing done for Turners. I have read the symptoms and they fit her. I NEED someone to reach out to and you seem like a kind soul. Once diagnosed, what do I do? How do I tell her w/out scaring the crap out of her??
Thanks!
Kim E
Turner Syndrome
Im 21 year old, I found out i have ts when i was 15 and since then iv been researching all about it. this is the my only weakness,times i wanted to kill myself,but later on i saw so many girls having it and they didnt give up on life like how i did,so i decided to move on.Found a boyfriend who loves me like crazy he knows about my problem and is ready to accept me in any way.weather i have it or not
i gave a lot of questions to ask. im going to get married InshaAllah in about a year or two.
im really scared my only wish was to have kids.
Can anyone please help me out
My mom never told me i have this, i jst heard the doc say once that your daughters ovaries are going in failure.
at first i didnt know what that meant.so i searched and searched day and night and found out i have few symptoms for turner syndrome.i was so broke, like completely,and id say i still am.
I dont get period.i only get it when i take the medicines that the doc gave me for estrogen.
but i stoped taking them as well cuz im scared about osteoporosis
Hey, there are two
Hey, there are two possibilities that I know of. You can either have an egg donation, so you can go through labor, or you can adopt. A mother is a woman who loves and takes care of a child, not if they have the same DNA as you or if you gave birth to them. However, I hope you figure out what you and husband want to do and are happy with the results. Good luck!!!
well im only 16 , & i dont
well im only 16 , & i dont have TS but the only thing to do is praise the lord ....& watch how your wishes come true just have faith : )
being 52
Hi I am Pat, and was diagnosed with TS when I was 17 . I am 5feet tall so consider myself lucky. I have a full time job, a reasonable education, and am married to a fantastic guy!!!!! there is a lot of help for young women, but I have been a little scared as I have grown older, there are less answers to what I can expect as I age.
I am doing fine though, I beat colon cancer last year, and I am very much alive and kicking . Life is good.
with love
Pat
ts
Hey, you can get pregnant from ivf method if your uterus size is normal. It is costly but you can. Good luck
47 and fine :-)
Just had to reply to this post. I'm 47, 4' 10" tall and 140 pounds. I'm happily self employed and ecstatically married to my best friend for over a decade. My daughter and granddaughter (non- TS) are doing great too. You find out who your true friends are, make lots more along the way. You can live a very full and happy life. Stay positive and walk with pride in yourself.
I'm beating breast cancer and dancing all the way. :-)
Love and hugs,
Angel
my name is natalie i am 28
my name is natalie i am 28 years old with turners syndrome i found out that i had it from the age of 7 years old i was told that i would'nt have kids of my own i dont know what to think cos u hear girl with having kids of there own i am going tho ivf at the mo i can carry normal it just haven't got the egg to have my own kids xx
Please let me know how it
Please let me know how it turns out because i have turner syndrome and im thinking about doing the ivf to.
My sister has Turner's
I didn't read through all your comments but I was considering the possibility that my unborn child could be a girl and have Turner's because my sister has Turner's.
On the bright side, she had two children, not one but two, with no fertility treatments. My mother tells me that she has a "mild" case of Turners, whatever that may be, but she has dealt with the growth hormones (she only made it to 4'10"), the thyroid meds (daily) Synthroid(?) high blood pressure and failing ovaries.
So Turner's ladies, don't loose hope...best of luck to you.
Ovaries
Hi there,
Doctors want to remove my daughter s ovaries, she is 6. There is no sign of problems, just as a precaution . I'm not sure I want this done.
How many , if any, have had their ovaries removed ?
I really need some feedback.
Thank you
I'm 13 have and have
I'm 13 have and have turners,was diagnosed at 7,I had my ovaries removed at 9,and will be stopping growth hormone and starting estrogen treatments later this month kinda nervous
Don't worry
My daughter is 13 and she has her ovarian removed 6 months ago. It's better to getting remove because it could be bad in the later on that was what doctor told us. Good luck with all the Ts's and parent
TURNER SYNDROME
Hi, I am a 42 yr old woman with Mosaic TS. I was diagnosed at 12yrs. My Mum was not given full info - just the bad!! They painted a very black picture. School till I was 14 was not good - they had ZERO understanding and NO willingness to help or understand. They said I wouldn't hold down anything but a basic job. Then, after my parents pushed and pushed, I went to one of the best schools ever! Guess what - College, a full time job (very demanding), lovely, understanding colleagues, a good social life and a very happy life! I now have my own home, a job I love and I am very fulfilled person. I admit the not being able to have my own kids is a downer and not a small one, but I have learned to cope and live in the now. Anyone out there who is frightened about having the condition or their daughter having it should google for the Turner Syndrome Society for their country (UK, Canada, Norway, America and Australia have big ones) and contact them rather than live in fear. I do know on average TS life expectancy is no shorter than the national average for their country.
Hi. I am a 29 year old woman
Hi. I am a 29 year old woman with turner syndrome (mosaic) . I found out when i was 13, and at the time it was hard to take in but i knew i was different. I got to 5'0 with my injections and dont really have many other obvious signs of the condition. I live a 'normal life' now, full time job, i drive, i have a lovely boyfriend and we have talked about ivf, i worry about getting pregnant because of the problems that can happen. I would like to know if anyone has been through ivf with turners to ease my mind. would be nice to speak to someone in my shoes.
**email me :)**
hii
hey my name is melina earnest i am 22 years old and i found our stories to be pretty similar
only i was not diagnosed with the syndrome until i was 18 years old and like your self i did not
present any of the obvious signs except that i was short and not very short at that and i never started my
period. when i was younger i had even been to genetics clinics and everything and i too wanna try ivf and
would like to know about other peoples experiences with ivf.
HI Melina my name is Natalie
HI Melina my name is Natalie I am 29.I was reading the email you replied to and was going to reply but realised it was sent in 2011 then I read your email and it was sent last month so thought I would reply. I was diagnosed with Turner syndrome when I was 7 years I also did not present any obvious signs I have a mosiac form of the syndrome which makes you less effected I am only just 5 foot and had very bad ear infections as a child and never started my period . we had our first atempt at ivf in 2010 with the help of my very brave sister she kindly went threw ivf drugs and egg collection for us and became pregnant for 3 week ish which is 5 week in ivf terms but the 2nd blood test showed at week 3 showed the pregnancy levels had fallen from 50 to 30 and by then should have up to around 2000 (or if it was low at least riseing every 48 would be a very good sign ) I put this so as not to scare any one going frew IVF because low rising levels do result in perfect health babys. 2010 was very hard we had to wait another year to have IVF again my sister said she would go threw all this again this time was only good news and levels went from 152 in week 2 to 2317 in week 3 which is realy week 5 in IVF. The pregnancy was stright forward at week 6 and 1 day I had a bleed but baby was fine heart beat good no blood any where near baby and at 12 week scan was told I had a placental lake which what I understand is where part of the placenta is not attached and there is a bit of blood between your womb and the placenta thay said I may get a bit of spotting and if their superior was concerned thay would get back to me no spotting and no one got back to me. Thay told me thay would not let me go over 40 week but when I went back just 11 days befor due date thay did not remember saying that and would let me go to 42 week like every over woman as a result we had a gorgeou baby boy called Jacob 7lb 2 at 41 weeks to the day by C section with hardly no amnieo fluid round his. The good thing about IVF when you have turner syndrome is you do not have to try for a year befor you can have IVF .Try not to panic when going frew IVF what will be will be . Try not to do any thing you would regret when doing IVF if you will feel bad for carring all that heavy washing let some one else do it . I found telling the truth at work is the best way. As a turner syndrome woman best to get your heart looked at befor becomeing pregnant. If a doctor tell's you thay will not let you go over your due date get it down in wrighting and get them to keep an eye on fluid anound baby towards the end of pregnancy.good look and best wishes
need help !
Hello , i am farah from kuwait 21 years old
i am pregnant and i made a cord blood test for my baby and she is a child with turner syndrome ..
i read about about it .
but , i really need from to tell what are the challenges that you faced ?
and how you accept your self and what is the role of your parents ?
Thaanks
plz reply as soon as possible :D
Turner's Syndrome
Hi Farah,
My 16yo daughter has Turner's Syndrome and was diagnosed age 5. The challenges we have faced have been relatively minor but very emotionally difficult for me, because nobody ever wants their child to struggle. She has had ongoing hearing problems and suffers from permanent mild hearing loss. She has worn hearing aids only for school, though much of the time she doesn't bother and does fine without. She is on daily growth hormone injections which she is now brave enough to manage herself with the very fine needle. Most of the time they do not hurt at all, if you can believe that - but she has reached 5ft 1/4inch (153cm) and is still growing. She recently started Oestrogen patches and is showing small signs of breast development. Her height and lack of physical development has been difficult for her as she stands out among her peers who have sometimes also made insensitive comments. She has also had difficulty forming friendships as she has always been socially immature for her age. However, she - and every other girl with Turner's Syndrome I have ever met - is the most sweet-natured, loving and kind-hearted person you could meet. Academically, she has also had to work very hard to achieve results, but she is managing well and has gone from strength to strength. recently, we also discovered she has high cholesterol and we must modify her diet. I think at every stage you are likely to face some form of challenge, but try to be positive and have faith because in the end your daughter will be a beautiful individual with so much more to her than the list of problems she may or may not face. Good luck. Try not to stress. Sophie
syndrome turner
hi!!!
My 10y daughter has Turner's Syndrome and was diagnosed age 1.She is on daily growth hormone injections since she was 3y.She is a very sweet loving and kind girl,very clever and very good at school.She is very special!!!
Good luck!!!
Hii .. SophieThis is my
Hii .. Sophie
This is my email
Email
Hi Farah,
Your email address did not show up. I think this website does not publish these addresses for privacy or security reasons. I joined Twitter to see if I can communicate with you that way and I can see you there. If you're still interested in staying in touch maybe you can send it through there, even in two halves so first tweet send the bit before the @, and second tweet the part after it.
Farokha.91 is the first part
Farokha.91 is the first part ... It is hotmail :p
I hope u will get it :d
thanks
Hello sophie ...
I really appreciate your responds to my letter...
And I think your are really proud of her and urself ,too.
Now I am in my 35 week of pregnancy . And I can't wait to see my little angle :)
Thank u again .. God pless u ;*
P.s : sorry for spelling mistakes .. English is my second language try my best to make better
@fr7o if you have twitter account
Hello again Farah, You are
Hello again Farah, You are welcome. It is my pleasure, especially if it helps to ease your anxiety and to help you to look forward to your daughter's arrival with joy instead of fear and sadness. I went through a great deal of this, and I had the benefit of knowing my daughter for five years before this 'label' was attached to her. I feel for you that the diagnosis has perhaps stolen from you the chance to enjoy simply the birth of your child. But I encourage you to put those concerns aside and know that the challenges you will face are very manageable while the rewards you will receive are a wonderful gift. I really do feel my daughter is exceptional with a great positive energy that she shares with others and I am constantly reminded of this through the enthusiastic responses to her that I receive from others. Of course she is an individual, as is your daughter, but if we can call it a 'symptom' of Turner's Syndrome, then I would say this beautiful nature is a constant theme that I hear of and a characteristic that I observe in others with the condition. A true blessing.
I do not have Twitter but would be happy to stay in touch with you through email if you send me your address.
As for your English, you are doing very well. It is much better than my Arabic!
Take care.
turners
hi my name is savanah and i have a lot of the symtoms of turners when i was little i had that eye thing and high pallet and im short and my heart feels wiered sometimes.... i never got my period im seventeen and i just gave blood work to see if i have it and i think i do i am sad cause i got a mri and they said i have no ovaries or how ever you spell it lol but i have a small uterus i am scared i cant get pregnet i know i cant on my own like i would need a egg donation but im scared that i cant do that or it might not work out but i realy want to be a mom some day and it is soo sad to see all these girls that are going through things i cant go through...... im also not the big cheasted soo that gets me mad the dr wants to give me hormones soo thats good but i feel ugly and out of place and i wish i know someone with it so we can relate and if i ever meet a guy how would i say to him i have turners and i cant have babies unless i get a egg donner i wish i could fix this and i wish i knew i had it when i was born instead of knowing now cause i would be use to it by now
i have turners as well
I have turners syndrome as well.. and like u i want to be a mom so badly i am 24 years old,, i have known about it since i was 13 and i been coping with it all by myself my mom dont really understand,, but i am married and i do live a normal life i would love to talk to some one so if intrested email me back thanks,,
Turner Syndrome
Hey Serendip, Even Im a have turner syndrome. Im 21 year old found out when iwas 15 coudnt help it.
I want to ask you many questions related to it. because im going to get married in about a year or two. im very worried.
Hoping to Help
Hey, i never knew about Turner Syndrome till i had to do a report on it in Biology class. I never heard about it but i did so much research, hoping to get an A or B at least, but now i support Turner Syndrome. And I'm sorry for all y'all had to go through. I know me being normal, no disorder, can't possibly understand, but i do. With the research i did, and interviewing people with the disorder, i understand. Still a lot of question, but I'm getting it. Again I'm so sorry for what y'all have to go through. I wish i could i help, but there's not much i can do. But maybe these can..
(Feel my body dying, controlled by this disease,
dying without a choice, someone help me please.
Looking at my body, blind to what is real,
others only see, never feel the way I feel.
Lying to myself, visions of untruth,
nightmares fill my night, repeating visions of my youth.
Men stole my innocents, changed the way I live,
love wasn't what they took, just something that I give.
Told that I was fat, saw the word they said,
never saw before, what I now see in my head.
One word changed my life, never be the same,
trapped in my own body, deadly victims game.
Staying alive for those I love, living life untrue,
never seeing me, only loving you.
No one there to hold me, every night I fear my last,
nothing can erase, dilusions suffered in the past.
Hope all but gone, recovery I fear,
who am I without, why am I even here?
Praying things will change, someone seeing me,
knowing I'm not eating, believing what they see.
Knowing I need help, standing by my side,
holding my weak hand, recovering what I hide.
Not my time to go, dying not my choice,
life I haven't lived, death silencing my voice.
Thought one day I might win, now my thinking wrong,
fighting death to live, takes me and someone strong. )
------------------------------------
(I am not the prisoner,
I am not the victim.
I am not the indifferent invisionment of impotent emotion.
And I am slave to no force.
I am destined to no foreseen fate.
I am a mind of intelligence and strength,
of the incredible survivor kind.
I yield to no iron bars,
I am not the prisoner.
I am not deluded to the purity that perfection promises.
I am aware of the total anonymity that anorexia awakens.
I am not the prisoner,
I set my own boundaries,
therefore I am limited by nothing.
I AM INFLUENCED BY NO ILLOGICAL SOURCE.
I am beautiful,
I am alive,
I am God own work.
And I am not the prisoner.)
----------------------------------------------
(If only I could dodge my fears
just go away and hide
to escape this fear thats haunting me
the fear I have inside
If only I could purify
wrong fragments in my being
I'd choose the bits that had to go
the new life's old unseeing
If only I could see myself
like others wish me to
but everytime I take a look
the wieght just battles through
If only I could find the end
to my life's long day
I'd never have the courage
to face it anyway
If only I could find a way
to talk it through from the heart
I know who I'd explain it to
but where on earth do I start
If only I could love myself
If only I could win
I know I'd go and live my life
If only I knew were i stand)
------------------------------------------
(I sit and think
I am so confused
I don't know what to do
now that I know what I can lose
I want back my body
I want back my mind
Known to be happy
and known to be kind
Scared and unsure
is how I feel
The voices in my head
are spinning like a wheel
I want to feel loved
I want people to care
not to be talked about
or have people stare
I wish they understood
I wish I knew what to do
I want to be myself
and start anew
I don't want to feel this sorrow and pain
I don't want to be scared of the weight I should gain
I want to go out
not stay in alone
but I don't want them to see
the size that I've grown
I sit and plan what is my next meal
then I dread of how it will make me feel
I am hungry and eat
but then begin to fret
I feel guilty and more than that, regret
"You are too skinny"
"Why don't you eat?"
These are things
they are starting to repeat
I want to look in the mirror
and see the true me
and look so much deeper
than my body
To just be myself and now worry at all
that would help me up from this one great fall
My optimism remains
I will recover
It's going to stop coming back
and I'll be better forever )
-------------------------------------
(I want to live,
I want to die,
I want to laugh,
But I only cry.
A thousand nights,
A thousand tears,
I wish it would stop,
It's gone on for years.
A thousand nights,
A thousand fears,
How long will it be
Before somebody hears?
I'm screaming for help,
I'm screaming for love,
For someone to cherish me
As they do a warm glove.
I cannot express the confusion I feel:
What will I eat for my next meal?
I wish this would stop,
This spinning inside,
I have nowhere to run
And nowhere to hide.
I can no longer bear this anguish and guilt,
Someone knock down this brick wall that I built.
The wall that defends me from inner pain,
Has at last I believe made me insane.
For I can't continue much longer like this:
Which meals to eat,
Which meals to miss.
I just want some love,
I just want a kiss.
For someone to tell me that things are O.K,
That I'll be free from this curse,
Eventually some day. )
-------------------------------------------------------------
(You are not alone, poor lost soul.
All hope is not gone.
You see only you, but there is so much beyond.
Blinded by the lies,
You know only suffering and emptiness.
It helps to know that you are not alone in this battle,
but there are so many who have overcome and are cheering you on.
Please trust in what you cannot see,
And take the step of faith.
Oh, worn and tired child,
Fall into the arms of He, your Father, who has felt your pain and has
overcome.
Your search ends here,
For you have found the key.
You may now experience love, joy and life abundantly.
Fear not!
For He has chosen you!
He calls you to obedience, so trust His word is true.
You have nothing to lose,
and more than you can imagine to gain.
Trade in the lies for the truth
And in Him (Christ) you will never be the same.)
-----------------------------------------------------------------------------
(Different people, different stories
Different battle, different glories
Similar feeling, similar faith
Similar destiny, end in waste
Towards the path of mindless state
Towards the country where no one stays
Lonely houses and lonely yards
Lonely nights with moon afar
None ever came to say hello
None ever had a dream to live
All they wanted to see some land
All they wanted was peaceful sand)
people with turner syndrome,,
people with turner syndrome,, add me on Facebook please.. or send me your email addresses...
Thanks (:
Hey. I am 29 with Turners
Hey. I am 29 with Turners Syndrome. Feel free to add me on facebook ;) The name is cassie schrode
Hello CassieMy name is
Hello Cassie
My name is Samantha Shea. I would like to add you on facebook but I can't figure out which one you are. Could you please find me my email is
hope to talk to you soon
25 yr old with turners
o.o I have known since I was 14 I am very mosaic because I went through puberty, but I never started so my mom took me to the doctor. Iam lucky I got 5 feet in the short time I was taking hormones. I was just curious ,because a guy has caught my interest and was wondering how the whole sex thing goes with us or are we normal for that. I know its a out there question and i have asked my qyno and she said everything was normal, but I felt like she didn't know anything about us turner girls.
guys
I am much older now. But as I read these comments, I cried and feel the hurt and rejection all over again. I would suggest using much discression when dating. I feel that most men see the small woman as a toy, a doll something to play with and then to throw away. There are good people out there. Just be careful. Be confident in yourself. If you are not confident they can sniff it out and take advantage. When in doubt do without. Animals give unconditional love. Get a dog, cat, horses are especially loving, feel your hurt and actually help to take it away! And seriously, I would rather have a dog, cat, horse, chicken, or one of God's other beautiful kind and loving creatures in my bed than a man.
Hiya , My name is Katie and i
Hiya , My name is Katie and i have Mosaic Turner Syndrome.
And for all you women that are giving birth to baby girls with Mosaic Turner Sydrome this should make you feel at ease.
I found out i had the condition when i was about four years old .My mums friend noticed because her daughter had the same thing and informed my mum and it turned out i did have it :) .
Growing up i suppose i have been VERY lucky to be the way i am. I have taken growth hormone injections since finding out and i am now 18 and i have reached 5ft1 which is still short but i actually dont care because well lots of people are small! even celebs!
In school i was never treated differently as nobody noticed because i dont have any of the physical symptoms of Turner Syndrome.
As a child i never had behaviour issues.. well okay i had a tantrum when i didnt get my own way but thats because i suppose i was spoilt i never acted up to any teachers or any of my elders or lashed out due to behaviour issues , i played up for my mum alot but thats more because i was spoilt. she coped with me very well and i respect her majorly. I never had problems fitting in primary school or secondary school because like i said nobody knew about my condition . o i do sympathise and feel for the girls with the turner girls that have been treated differently due to the condition. yess people would say "wow your small" but thats hardly offensive lots of people are short , with or without turners
As a child i suffered with cramp ALOT. like my legs would get stuck in cramp and it used to be agony and i used to scream in pain which was quite upsetting for everyone and i got ear ache aloooot but with the support of my mum got through it :) as i got older the cramps and ear aches got less frequent. but as im getting older my body aches more like my bones hurt ... and as a child i didnt drink milk , HUGE mistake!! make sure your turners child gets alotttttttttttttt of calcium as it will benefit her when she is older.
I never had learning difficulties , i passed every subject including my A levels , i only needed a little extra help with maths.
I started puberty normally and started my period aged 13. they can be a little bit irregular but so can every other girls? i dont have any of the physical symptoms of a turners girl accept height and i have moles like i dont have any webbed features or a flat chest? im actually a 34DD :\ which again i feel lucky so dont feel just because your baby has turners its going to be messed up for life because its not like that :) and alsoo it is possible for a girl with turners to have a child naturally so dont give up hope <3
im only 18 so i would like to ask the older women with mosaic turners what is it like further in life with turners? what have i got to come?
any questions older women or younger just ask <3<3<3
Your story seems very similar
Your story seems very similar to mine! I was diagnosed with Turners early around 6-8yrs, no physical symptoms except short stature but I made it to 5ft 1in with injections. I get very upset when people talk about our 'learning difficulties' or 'bad behaviour' I was apparantly always as good as gold very sociable got on with every one and completed education past degree level with mostly A's at school, even maths I got a B. Recently bought a house with my boyfriend and as I've always been honest about my condition from the outset we've just made an appt with the fertility clinic together. I've never been given a definitive answer about the kids issue,Ii've been told no I cant have kids but then in scans they 'thought' they saw a shadow of an ovary and although I've been on oestrogen since before my periods when I come off it I still have a small bleed sometimes which to me seems like there may be some hope, if not we will use an egg donor as I can still carry a baby, I just want a definite answer which I'll push for in March at the clinic. I'm 22 so not much older than you but your story seems most similar to me and Turners does not affect my life AT ALL except the kids issue but there's ways around that and I love my dogs anyway. Don't worry just forget you have it until you get called for your appt's and they'll make sure nothing is developing.
my child
HELLO EVERYONE!sorry if my english is bad,i am from serbia.i am 33 year old mosaic turner syndrome.i`ve been diagnosed when i was about 6 or 7 years old.I was told it is 8% turner`s syndrome because only one little part of x chromosome is missing,not the whole.I guess i am the lucky one,since it seems i don`t have too much physical symptoms,just not so tall.I started taking growth hormone therapy at the age of 9.it lasted a year.When i was about 14 years old,doctor gave me progesterone,so i got my period.right after that,i began taking hormone therapy,taking cycloprogynova. My gynecologist told me i must take that medicine until my menopause(until i would be 40,45 years old).i have my periods regularly,every month. Now i am 59.84 inches tall(about exactly as my mother). I just got married,i would like to have a family...i am also aware that it can only be done with IVF.The fact that my ovaries and uterus,and my reproductive organs are normal size,gives me hope that i could stay pregnant.The only thing that worries me is that can i use my own egg?if i use a donor`s egg,the child would not genetically be mine...if someone done IVF with it`s own egg,please,let me know...i wonder if i could have genetically my own child..
Biology Subject
Dear Serendip Visitor sanja
I have a biology project on Turner Syndrome and i have to interview someone who has it. I no it is hard on you for having this disorder and i feel sorry for you. You are lucky with only having 8% of TS, a lot of people get it worse. You can use IVF to have a kids, cause a lot of people hav done it and the baby will still be your even if it aint your egg, cause he/she will love you all the same. Please dont take offense to the questions because they are from my project.
1. How did this disorder affect your life?
2. What are the limitations to this disorder?
3. How old were you when you got this disorder?
4. What were some types of treatments you were given?
5. Do you no anyone else who has Turner Syndrome?
Thanks Lee Perry