Turner's Syndrome-A Woman's Disease

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Biology 103
2002 First Paper
On Serendip

Turner's Syndrome-A Woman's Disease

Melissa Brown

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

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

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

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

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

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

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

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

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

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

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

 

References

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



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

Comments

Jackie 's picture

Help? :)

Hi I turned 16 at the beginning of January, I was diagnosed with mosaic turners syndrome when I was born. I have been on estrogen patches to help with breast development and to help finally get my period. I was at school the other day and noticed some blood in my undies. I've only been on the patches a few months I don't remember when I started them exactly. Is this my period or is something wrong?!

Serendip Visitor's picture

Hey! I am 17 and was

Hey! I am 17 and was diagnosed with turner mosaic just a few weeks ago. Iam 4'8 and I am really scared that I wouldnt grow taller, even with the hormones, because I am already 17. And also I am almost flat chested. :( But I dont have any ear infections, or the learning problems. But I still didnt get my period properly. I also have PCOS.
Please tell me wether I can attain a normal height. At least 5' And about the breasts.....

Carol Hillman's picture

Social skill development with Turner Syndrome

How understanding and forgiving should we be with social
"blunders" that can be exhibited with this syndrome. Can they all be taught with consistent loving attention or are we to
accept them due to the condition?

Renata's picture

Hi, I just turned 29 and have

Hi,

I just turned 29 and have mosaic Turner's, I'm not strikingly short and never had to take growth hormones. My period started naturally when I was 12 but it gradually stopped, by the time I was 21 I didn't have it at all. Had lots of middle-ear infections when I was a kid but not any more. My hearing is ok but is it gonna get a lot worse as I age? Am I going to go deaf? My heart is ok (so is my blood pressure) according to the cardiologist.They only started me on HRT 2 years ago. I went to a very good school, struggled with maths but always passed. Now I'm a law student so fingers crossed :-)
To be honest I don't really know how socially awkward or difficult I am because I had a very troubled childhood so I can't tell what comes from the Turner's and what's caused by my past. But I feel very lonely,like an outsider, I never belonged. I'm oversensitive and too emotional.I talk to people and all that but my self-esteem is very low and I'm depressed most of the time (it's very tiring to act confident and positive, I just feel like crying most of the time). I'm absolutely exhausted all the time and feel burnt out, like I'm an old lady. Any thoughts, advice please?
I never actually talked about Turner's with a fellow sufferer.

Thank you.

Serendip Visitor's picture

depression

Hi Srendip....my sister who is 43 has turner syndrome and she has never been a social person and is extremely shy. She has a heart of gold, but she is SO sensitive. So know that it is apart of the Turner Syndrome. Also, please talk to your doctor about this, you may suffer from Turner Syndrome, but you may also be suffering from depression as well. I myself am 41 years old and I have PCOS and depression. For years as a young woman I felt alone, isolated, tired, as some would say the sun never shined as brightly for me as it did for others. Until I went for counceling and received medication. Now my life is much brighter...oh I still have my days, but my good days out weight the bad days. So please, don't just sit and stand in one place get out there and tell these doctors what you are feeling and what you are going through. If one doesn't listen, fire them and go to the other until you finally find one that will help you get through your depression.

From my experience with my sister, she can have mood swings, she tends to be high energy often working herself down to exhaustion, driving is a little difficult for her, but she manages. I sometimes realize that she doesn't understand or take things the way others would, she very forgiving not easy to upset. She speaks well, but slow and delibertate. She probably would be diagnosed with ...oh I can't think of it, but when they wash their hands every 5 minutes, she cleans the exact same way as she was taught when she was a young girl. her style of clothes etc all stayed "or stuck" they way mom and dad taught. Unfortunately she didn't find out she had Turner Syndrome until way too late and she was never placed on birth control pills or anything. she had some slight growth and breast enlargement, but she didn't remain on it long enough to develop her internally. I hope sharing a little bit will help you see you will be okay and all you need to do is get with the right doctors

Serendip Visitor's picture

Hi I'm 32 and was diagnosed

Hi I'm 32 and was diagnosed mosaic when I was 27 as I kept having miscarriages.
I find myself retreating from all social contact as life gets stressful. I don't trust anyone at all.
I too had a very difficult childhood and I don't think that is the main issue as I have processed most of that by myself and have limited contact with my aggressors.
It's okay to be you!! You don't have to meet anyone else's standards in any manner of speaking, only your own. Try to determine what you need and truly want.
Thinking that I wanted the numerous friends others had did nothing but make me sad. Now I don't hold myself to that and I am glad! I'm a lot happier and see things and people for what they are.
Many people have these issues with idyllic childhoods and two sex chromosomes.
As far as fatigue; press to get your liver checked by ultrasound and also blood work too: often there are non-progressive issues with TS. Then get to an endocrinologist or naturopath and get your vitamin levels checked, as I'm noticing quite the trend of low vitamin levels in TS people which can make you horribly tired.

Serendip Visitor's picture

Me too!

Hi
I am a bit older than you, 47, but only in years, not in soul ;-).

Anyway, i too have just this morning discovered I am mosaic TS and it is changing my life - but in a positive way! You see when I was a young girl, then teenager, young woman and to this day I always had the symptoms but at the time the doctors I saw never quite joined the dots, so they were just a bundle of separate symptoms which apparently no-one had ever seen before, so i was always a bit "odd". In later years when I thought little of it except the infertility bit, I came across turners and had my chromosomes done more than once, but I guess they didn't know about the mosaic bit, so it was discounted. At that point I looked it up on the internet & to be honest what I found freaked me out, i was glad it wasn't what I had. Now by another twist of fate I looked it up again as apparently someone I know has a daughter with it and I was wanting to show what it was - and hey bingo! Mosaic is me! Right down to the psychological stuff and me babbling on like this! I never thought I would ever find anyone to talk to who would truly understand - this morning apparently instead of being a lonely one in the universe oddity, I am one in 2000 and I am so relieved! So if anyone wants to talk - I'm ready to share and listen and understand. X

Serendip Visitor's picture

Turner Syndrome

Hi everyone.

My name is Sarah and I work at a school in Cheshire. I have always been short and have tried to compensate by wearing extremely high heels. I don't think that I've grown in height since I was about eight or nine. The rest of my department are constantly teasing me about my height and always making comments such as "are you standing in a hole" and "stand up while I'm talking to you". I also have the word Small in my surname which is obviously very unfortunate as well.

Have you any advice?

Sarah

Sean Sortors's picture

Looking for a mate.

I always wondered if there was a dating site for women and men with TS. I would like to meet someone with TS. If you or anyone knows a site or wants to contact me please do..

Serendip Visitor's picture

Turners

From, what I have read on many different websites and such, men can not have tuners. A female fetus (normally XX) can survive with only one X chromosome, but a male fetus (normally XY) could not survive with only one Y chromosome. This is because not having an X chromosome is much worse than not having a Y chromosome. The Y chromosome carries very few genes essential for life. In contrast, the X chromosome is a much longer DNA molecule and contains many, many genes that are needed for cells to function.

Serendip Visitor's picture

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.

Lily's picture

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 :)

Gisselle Tavarez's picture

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.

Serendip Visitor's picture

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?

Serendip Visitor's picture

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!

CONNIE ANDERSON's picture

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.

Serendip Visitor - Shelley - United States's picture

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.

Sandy's picture

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 ?

Serendip Visitor named L's picture

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

Serendip Visitor's picture

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.

Serendip Visitor's picture

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.

Kim's picture

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!

Serendip Visitor Kim  E's picture

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

FARAH's picture

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

jeni's picture

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 : )

patricia selway's picture

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

sanaya's picture

ts

Hey, you can get pregnant from ivf method if your uterus size is normal. It is costly but you can. Good luck

BuddhaGirl's picture

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

natalie wright's picture

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

Yazzi Babi's picture

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.

Serendip Visitor's picture

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.

Serendip Visitor's picture

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

Serendip Visitor's picture

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

Thomas's picture

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

Cheryl's picture

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.

Joanne's picture

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 :)**

Melina's picture

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.

Natalie's picture

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

farah's picture

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

Serendip Visitor's picture

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

Serendip Visitor's picture

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!!!

farah's picture

Hii .. SophieThis is my

Hii .. Sophie
This is my email

Serendip Visitor's picture

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.

farah's picture

Farokha.91 is the first part

Farokha.91 is the first part ... It is hotmail :p
I hope u will get it :d

farah's picture

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

Serendip Visitor's picture

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.

savanah 's picture

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

Some one who wants to talk 's picture

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,,

Serendip Visitor's picture

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.

Taylor's picture

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)

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