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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

Serendip Visitor sanja's picture

response

hello lee perry...no,no offence,i am glad if i could help you...
1.i must say honestly,this disorder did affect my life,but i accepted myself the way i am.i found out about my disorder from my early childhood,so it was not a surprise that i am different from other girls.Of course,there were some child-like picking-on-me ,like nicknames,and jokes about me being short,but,i`ve learned that no one is perfect.I am 32 years old now,and till now,in about two more things it affected my life:about choosing profession,and planning to have a child(since i am married now).Maybe if i wished to be stewardess,for example,it could never happen,because i i`m not standard high for that profession(and some others, probably).
About the child,as i wrote in my first message,i have to do IVF,if i wish to have one.
2.this question pretty much relates to this previous one,so limitations are the same as affects.
3.this disorder is genetically caused,so it`s in my genes..it means i have it since i was conceived..:)
4.the treatments i was given were: genotropyn (growth hormone,1 year,one injection every day ), progesterone(i forgot)...and cycloprogynova from 16,17 years old,till now..
5.no..i haven`t met anyone...doctor wanted me to introduce other turner patients but i didn`t wish that(i had no time for that,because i had some problems in my family,and had lots of obligations about going to school and coledge..)...
i hope this would help you ...greetings from serbia..:)

Serendip Visitor's picture

i m also having Turner's

i m also having Turner's syndrome and i am very much worried about that...i m short and teased by many people.I dunno what 2 do.I want a relief.Actually i am feeling so inferior.I am 4 feet 8 inches tall.Is it normal? please help me..

Serendip Visitor Deb Wilkens's picture

short stature

Hi!

I just read your e-mail. You said you are 4'8" and wondered if that was normal. I am 4'11", I stopped growing at age 13. I do not have Turner's that I am aware of but my granddaughter does. She is 18 months and small for her age. She had cardiac surgery to repair a coarctation of the aorta about three weeks ago. She is such a little dynamo. We are learning about Turner's as a family so we all know what is happening with our Abby and what we can do to help. Do not allow people to get you down. Just because you are not tall does not make you inferior. Sometimes it is easier said than done. :) I hope things are better for you and you found some help. I have been reading lots about Turner Syndrome and posts from women who have it. When I first heard that Turner's was suspected in Abby when she was born I had never heard of it before. I started to research it so I would understand what was happening with her and what to expect for possibilites later on. Abby is a most loving and active little girl. She is a little shy of people she does not know and she is currently undergoing some intervention for speech. She does talk but she seems to learn a word, say it once and move on. She does have a few words that she repeats but very few. I wish you the best and hope you have found some ways to cope and not feel so badly about yourself. Everyone is unique and valuable. Thank goodness what a boring world if we were all alike. Take care.

Kayla Petro 's picture

Turner Syndrome.

hi,, my name is Kayla && i've known that i've had T.S since i was 15 & i am now 20 & havent gotten any treatment... is it really possible to have a child naturally?

deyane's picture

hi my name is deyane and im

hi my name is deyane and im 15 years old and i just got diagnoised with turners syndrome. i was just wondering as you have turners.. what did you do?? have you got your period?? what did you do as treatment? i still dont have my period and i was told that i will never get it....?

Serendip Visitor's picture

Hey

thank u so much for replying back to me. It means the world to me. I dont like telling people about me having Ts either cuz for the same reason. I dont want anyone looking at me any different because im not like u said we r just missing a X cromosome lol

it's KelseyApocalypse™'s picture

Quick question...

uhm, are yew talking to meh cuz i'm confused >.<

Stewart Sanson's picture

My eyes have been opened

hello everyone, i would like to say that i am a 15 year old boy who chose to do an assignment on Turner Syndrome and reading this article and reading a lot of the responses has really opened my eyes to people with Syndromes and disorders, i would like to thank all of you for sharing your stories with everyone, it really does make a difference :D

it&#039;s KelseyApocalypse.™'s picture

Lmao.! What the hell.??

haha wow, i didn't kno Turner Syndrome was a disease.? o.O last time i checked, it was a condition. ;) anyways, i came across this &' i just felt i had to correct this idiot. my names kelsey &' i'm 18 yrs young. i'm currently 4"8 &' 89 pounds. yeah i'm small i kno >:) i obviously have Turner Syndrome aka TS for short. i found out i had TS when i was 11. i don't have much of a webbed neck, i don't have swollen feet o.O, my hairline is a bit low, i don't have high blood pressure, i'm not the smartest kid in school, i don't have a period (witch is cool btw cuz i don't have deal with that) i'm short obviously -_- but i really don't mind :) everyone thinks it's adorable. especially guys. ;) lol, i guess my TS isn't that bad. anyways, i started taking shots to grow right after i found out &' i grew a little. i'm not gonna get much bigger then 4"8. at least i don't think o_O. look, having TS can be a bit frustrating at times. i've always been picked on cuz of my hight, but hey no ones perfect &' yeah no one wants to be short. but honestly, it's not a big deal :) &' this persons retarted "socialy challenged" uhm no, not at all. i have a normal life. i have lot's of friends &' i'm one of the most popular kids in my high school &' i'm working on becoming famous (so remember the name pple.). i'm very social as yew can see :) &' uhm what's with the "blurts out what ever comes to there minds".? o.O what the hell, this persons just making up shit now):< excuse my french. i think yewr thinking of Tourettes idiot. i've never in my 18 yrs of living have randomly blurted out shit. -_- especially in school dumbass. don't listen to this person. yew can live a completly normal life with TS. i'm living proof :) just do regular checkups, exercise (live heathy basically.) &' don't act like yewr completly different from everyone else cuz yewr not :) yewr just unique. it's not the end of the world.<3 add me on facebook or myspace "Kelsey Torres". or email me at . if yew have any questions, just ask :) later pple.<3

Love&'Rockets,
KelseyApocalyse™

TD Mbutma's picture

Hi I was really inspired by

Hi
I was really inspired by your response.Im 26 years old I dont have TS however i have a 9 year old with TS. Yes you probably going like Holly cow!!! yes i was young when i had her and on top of that i found out the same day that she was TS. It changed everything in my life, it made me a better parent, i accepted it and gave her love. tell you what reading your reply just painted a picture of her. she has more confidence than i had when i was her age, she is the smartest kid in school(again TS research proven wrong), most active. Its the same thing with you, she has accepted her condition but she doesn't want people to judge here based on her condition...ohhhh btw yes i was also shocked to read that it is a disease, what the heck lol....anyway back to my munchkin she get teased a lot in school but since she knows her condition we usually turn the situation into jocks:)). I tried finding you on FB but i couldn't. I feel like you would be a great inspiration to her whenever she needs it. if you dont mind you can email me on stay blessed and bubbly as you are. you are a blessing to your parents. later!

it&#039;s KelseyApocalypse™'s picture

Quick question...

is this towards meh .??? :o

Serendip Visitor's picture

hey

Thank you and you can contact me for any questions that you have. on facebook im under Danielle Dixon if you add me as a friend i will be glade to accept.

Serendip Visitor's picture

Hey

Hi my name is Danielle and i am 21 years old and i have TS. Yes its is frusrating but i have known for a long time i have TS. I hate telling people that i have TS because i dont want anyone thinking that it effects me mentallty it just basicly have to do with your reproductive system. I would like to talk to someone with Ts so i could see if they whent through what i had to go through growing up. It was so hard watching my younger sisters growing up because i always felt like i was not normal. In school i was always very quite and didnt talk to very many people. Im only 5'1 and i was always made fun of for my hightyh but i dont care anymore i just tell them that im not short im fun sized lol. But like i said i just want to talk to someone with Ts and see if they had to go through the same things.

C.C.'s picture

:)

Hi Danielle.
I'm 5'0 and I don't have TS :) don't let the teasing get to you... Ppl always call me shorty or chiquita etc...but its more like a cute pet name and it has no negative connotation. some ppl is short some ppl is tall wether they have TS or not.
My daughter has TS and she is tiny she's 7yrs old ...almost 8 and she's only 40" tall. I always encourage her to not feel down bc of her size... I tell her...look mommy is tiny too and have lived a very happy life i have great friends...my friends love hanging out with me cuz they say I'm funny. If anything...my only challenge has been to reach the kitchen cabinets....lol seems like everything I need is on the top shelf :):)
Anyway... don't feel down.... my sister and brothers are all super tall and I was just the small one but always made the best out of it... I loved always been the first in line at school (cuz they line u up by size). I feel very protected by my friends and I would always go for the tall boyfriend....they make u feel so tiny in their arms...aaaahhh!!! ♥
I hardly ever disclose that my daughter has TS because I don't want to use it as a handicap card and make ppl feel sorry for her...she is a very happy girl and tell her every day she can do anything she puts her mind into.
I tell u all this as a mother.... the same words I tell my daughter I tell you...Be Yourself and don't let negativity bring u down.
I understand that some TS girls have lots of complications (heart, hearing, thyroid, etc) and we are blessed that none of that happens to us.... I hope and pray you life a healthy life too.
Take care girl and smile :)
PS1: I love high heels, spadrilles & wedges...they add a few inches and I feel tall for a moment lol
PS2: Oh and yes... I have to get all my pants altered...unless I buy them at the petite section :) So don't feel like you're alone!
PS3: When playing hide n seek I can fit in the smallest spaces....they'd never find me :)

it&#039;s KelseyApocalypse's picture

hi.

hello danielle, well yewr deffinetly lucky to have reached 5'1 lol, but uhm yeah i've been through similar things. i've always been teased about my hight but i've always been a smartass about it like the (yeah i'm short but yewr ugly), (i'm a girl so it's okay), (no really, did yew just figure that out), (oh my god, thank yew for letting me kno) &' my personal favorites (calm down, i'm not that short &' no shit sherlock ;) haha. obviously i'm not very shy. i've alway been this way, even after i found out i had TS. i told myself i wasn't gonna let something so small effect me. i guess i've grown to except the fact that i'll never be as tall as Kat Von D, Megan Fox or Angalina Jolie but that's okay cuz i'm kelsey &' i'm happy with being me. i never tell pple i have TS cuz it's not a big deal &' i don't want pple to think i'm like an alian err something. i hate when pple say that it effects us socialy &' mentaly cuz it doesn't. we're missing an X chromosome, that's it lol. the only thing i don't like, is not being able to have children.

clementine's picture

reply

you are one off the very lucky ones iv got turner sydrome i have ts and i find it hard people do treat people diffrently iv know two people with turners syndrome one i cant rember but my parents told me about herand she was deaf because of the turner sydrome anthor girl i know is 15 and she cant talk to everyone she is very shy and is afraid she might say the wrong thing and people treat her like she is stupid because of it dont think that every one can lead a normal life

it&#039;s KelseyApocalypse's picture

hmm

i'm sorry to hear that but that shouldn't stop them from trying to lead a normal life. everyone with Turner Syndrome has had some rough times but at the end of the day we're just as normal as anyone else &' we can accomplish so much. don't let anyone tell yew different.

lucy cook 's picture

hi

hi my name is lucy obviously I'm 25 and I was just wondering if you have a specific type of ts as I have mosaic ts. I have had a pretty rough time, though lately I feel like the luckiest women in the world and wanted to say if u needed to chat about anything Im here ok

it&#039;s KelseyApocalypse's picture

hello.

hello lucy, it's very nice to internet meet yew :) lol. uhm well i'm not sure what type of TS i have, unfortunately, all i kno is that i don't have it as bad &' i'm sorry to here yew've had a pretty rough time while having TS, but i'm glad to here yew've felt lucky latley &' i'm here to talk to as well &' to answer any questions yew might have as best i can. :)

Katey's picture

Help

Hi my name is Katey,

i found out i had turner's at age 13. and went thur alot like most of the turner's women out there. i am now 26 yrs old and live with my partner and we have been together for 4yrs now and have a fantastic relationship and are thing of getting married. and with that come's the decision about adopting a baby since i can not have a baby myself and as i write this i find myself getting upset cause it hurts to know i can not have a baby myself. i was wondering if anyone out there can help with any information about adopting children. i live in Australia and know it is VERY hard to adopt here in Australia. if anyone can help with any advise on this please write back to me

Thanks .....

Deb's picture

I am 58 years old woman with TS

Hi. I was diagnosed at birth, a webbed neck and deafness...I have veritgo due to inner ear disease from time to time...Started my period at 12 and had a baby naturally at 23...My daughter doesn't have TS. I have been taking meds for borderline high blood pressure for about 9 years now...I am now retired and I enjoy spending more time with my grandson :)

tina's picture

mosaic turners

hi, I am the mother of a 25yr old turners young woman. I have read so many negative articles on the syndrome that it seems there is a lot of mis information out there. my daughter is very artistic. she did her degree in visual arts specialising in portraiture and then went on to do her teaching degree. no bad for someone that the dr. who had rung and told me her blood results when she was 5--well it was a death sentence over the phone-- i hope he rots in hell for the emotional torture he put me thru and then my husband. anyway enough of that. my daughter has the mosaic form of turners. she started her periods naturally at age 8 ish. she still has them but this last month she hasnt; its a constant battle keeping the weight down so she works out at the gym also at home on the exercise bike, walks heaps and what can i say all that exercise may have triggered her periods to stop. she will go to the dr. next week for a check up. what i cant fathom is when one is going to drs or specialists that one is dog tailed with turners on the documentation. most dr s are totally unaware or know viirtually nothing about this.l was very glad to hear that your a grandmother. your so lucky. most of my friends have grandchildren, maybe no one day it will be my turn to.

laurie's picture

TS

My daughter was just diagnosed with mosaic turners. She doesn't have any other features except her short stature. She is 4'9 and never to grow again. She has been on her period for two years. What did the doctors tell you about having children? Did they say you would have a child with turners if it was a girl? Can a boy carry the turners gene? We seen the doctor in toronto but i was in shock and didn't get enough info. Can you help me as a mother answer some of these questions or do you have any recommendations that you can give me? It's all new and i'm feeling over whelmed! You seem like the best person on this sight to talk with the others are a bit young altough my daughter is 14 maybe they could be of some help to her. Thanks Laurie

Dana's picture

laurie in toronto

I'm a mother of a girl with turners syndrome. They found out when she was born. Now at 13 years old she has been on growth hormones for a few years, they think she doesn't have ovaries, and just recently found that she has a mass on the right ventrical of her heart. They aren't sure what it is. It was very tough finding out that she had TS at birth and I had to do a lot of research on my own. I wish the doctors would have been more helpful. My daughter is slowly getting more self conscious and Im thinking of getting her a counselor to make sure she is doing okay. But please don't stress and know that she will be fine. She is just special but can live a long happy life like anyone else. Any questions please email me.

Miss E.S's picture

Living with Turner's Syndrome

I am a 28yr old Woman with Turner's Syndrome.
It was found out that I have TS in Primary School, I was a lot smaller than other kids in my year level. I had to give myself Growth Hormone Injections every day from the age of 9 to 16 and visit my specialist every 3 months for blood tests. It was hard for me because I am so fearfull of needles I would panic every time I saw the doctor. It was very difficult going on school camps and having sleepovers as I wanted to keep it all a secret because I felt it made me different and I didnt want to be different. It is hard to live with feeling different but everyone is different with TS or not with TS. I feel normal... (whatvere that is) I reached 5Foot :) which is still short but not compared to what I would have been without the help of Growth Hormones.
I have a small neck which causes me pain sometimes but nothing a massage cant fix...
I have recently become engaged and I am hoping to have a baby naturally as I actually got my period at 15 and still get it EVERY MONTH! trust in me your lucky you dont get it in a way.

Arielle's picture

I have TS.

I always felt different from my friends and didn't know why. My sisters started to develop and i started to get a little afraid of what was going on with me. I am the oldest out of 3 children in my family. So i talked to my mom about it and we began going to doctors to find out what was going on. When i was 18 i was diagnosed with ts. I have to admit its a very hard thing for me. But I've learned that EVERYONE IS DIFFERENT no one is the same. I do have some other learning disabilities. I have Mosaic Turner's syndrome. I am now 5`6 in a half. When i was younger i always new something was wrong,something was different. But I learned that its okay,and everything will be okay. About two year's ago i met a young girl with Turner's as well. It made me not feel so alone. The young girl, lived in my home town. I always felt so alone and when i met her everything changed around. I am now 22 year's old, and i am trying to find some medication that would help with my periods, all the medications that i had been taking never really worked quite right for me, i would either get a bad rash or i had taken a medication that made me really sick and i couldn't walk alone i had to have a friend help me out for a couple day's. Does anyone have any suggestions that have helped me out? I don't know how or why i have been alergic to these medication's. I have talked to my dr about it but were running out of idea's and things we could possibly do. If you have a suggestion please feel free to reply :) I hope everyone has a good day.

ts's picture

tS

Ts IS IS VEry Sad):

Danaka Reaney's picture

Mommy with TS

Hi,
I am a 18 year old girl, I was adopted and my mom has Turner's Syndrome. Let me tell you all that my mom is the most amazing mother I could ever ask for. When I was going through puberty she had some trouble offering me advice, because she never menstruated and such, but other than that she has offered just as much as any other mother could. I love my mom more than anything. She's never personally told me she has ts, but I heard my dad say it once so I looked it up and it all matches up. Sometimes I feel bad for her when we go shopping and nothing fits right for her, but she handles it very gracefully. I love her! And any other women with ts that want to adopt please do!

sister&#039;s companion's picture

T.S.

My sister is 7 years old and was diagnosed with turner's syndrome at the age of 5 and up till now, she is not complaining at all about it, except for the daily hormones that she has to be given, but other then that, she lives a very normal life. i try to learn as much as i can from this condition, and explain it to her as best as i can. There are not really any different physical appereances on her, except for the fact that she is very short compared to the rest of her friends.

Ariel Martin's picture

hi

hi if your parent take her to see a growth doctor tell her plz dont take the med. you will never know the effect take it from someone with ts i am 19 5'1 90 i was 4'1 at the age of 10 i found out when i was 13 it was hard to go through but you take care of her i am deaf.

louisa jameson's picture

I have short stature due to a

I have short stature due to a growth problem.I am now 32 and while my mum was pregnant all the scans showed only one baby.It wasnt till the last scan that i had showed up.My twin sister was a normal weight 8.0 i was born 2.7.Apparently being starved of nutrients is the main problem why i didnt grow during the pregnancy.My sister is 5'5 whereas i only managed 4'6.Where we live there wasnt any other short statured people so it was rather awkward growing up.I was obviously treated similar to my sister but she always had the upper edge on me.What i hate is having pictures taken i am usually shoved right at the front so i can be seen and usually near to my younger relatives.I am okay now with the problem just the stares i still get never mind.

c.p's picture

ts

Hi everyone I have TS , I found out when I was sixteen I am 19 know and I am 5.4 because I have tall parents, I don't have TS that bad I have to wear glasses and hearing aids in my tow years. I am planing to become an elementary school teacher and I will adopt because I can not have children. I was just wondering if there is any financing for schooling for girls with TS. I know having TS id\s hard but don't let it get you down.

Serendip Visitor's picture

okay guys, i wrote this two

okay guys, i wrote this two years ago. i have learned to be more postitive and okay with the condition. You can completely live your life normally with TS and its NOT the end of the world. I was just scared and worried about it at the time. Thanks.

Natalie's picture

turners isn't a disease

hello i just want to point out you've got it wrong, turners isn't a disease it is a condition:)

Serendip Visitor's picture

offensive

exscuse me, but i found the title of this really offensive as i am 13 and have ts and it is NOT a disease, it is a condition, if it was a disease there would be some sort of medication to prevent it so get your facts right before you go offending people please. from a not very happy 13 year old girl with ts :@

Serendip Visitor's picture

RUDE

the idea of this article is to HELP. Spreaduing awareness is how we are aware of such things as AIDS, HIV, and other conditions. I f all you have to add is quabbling over a stupid term, then you are not helping yourself. I found this article very helpful as I am making a project, and this gave me an insiders view. Be considerate of the fact that she is trying to help. Do yourself a favor and grow up.

Serendip Visitor's picture

Hey 'Rude', I think that can

Hey 'Rude',

I think that can be applied to you. Spreading 'awareness' is of course a good thing - spreading ignorance is not. To you what might be "squabbling over a stupid term" is actually "labouring under the burden of false labels" for people with Turner's Syndrome. It is indeed a condition NOT a disease, and the sweeping generalization about the individuals' disruptiveness and tendency to blurt out inappropriate things is unhelpful and offensive. My daughter has TS and I can tell you there are few people on this earth with more sensitivity and restraint than she. I am also qualified to offer an opinion - unlike you. It's YOU who needs to grow up and stop deluding yourself that picking up on any two-bit opinion expressed on the internet gives you an insider's view. You think any information, however misleading, is a good thing and we should be grateful? Well, no thanks, she's done more harm than good. Misrepresentations do no-one any favours and any valid points the writer makes are only discredited by her errors. And we, with first-hand knowledge are the only people in a position to judge, not you. Stop commenting on matters you know nothing about and refrain from making personal judgements. You are offensive.

Serendip Visitor's picture

Be Respectful

Be respectful of the opinions of others. All you're doing is presenting yourself as childish.

She's right, its not a disease. And she actually HAS Turners and knows more about it than readers. Spreading awareness is great but I also found this information presented strangely. I don't find that its all accurate. Its not fair to say that girls with Turners have problems in school, they blurt things out, socially awkward, etc. It CAN be part of it for some but not for everyone. My sister has it so I'm pretty familiar.

I would caution readers to search for medical sources. Lots of ladies/girls with Turners have such different symptoms (other than late/no period and being short).

Serendip Visitor's picture

well

I agree with you! I'm also 24 years old with turner syndrome and as much as i agree with you about the title some people don't see it like we do sadly... and they consider it a disease. They are just ignorant and don't really care to put their selves in our shoes... but once again you're right it's not a disease, it's a condition! :)

Serendip Visitor's picture

thanks

thanks for agreeing with me lol! im annoyed by it, and the other girl who commented, grpw up yourself and try and put yourself in our shoes! you dont even try to understand.

Rasheeda's picture

WELL MY NAME IS RASHEEDA AND

WELL MY NAME IS RASHEEDA AND I AM A RESIDENT IN ALABAMA. I HAVE A FRIEND THATS ON THE SCHOOL STEP TEAM WITH ME. EVERY SINCE SHE STARTED ATTENDED OUR SCHOOL I ALWAYS LOOKED AT HER AND JUST THOUGHT SHE WAS SO SHORT...WHICH WAS 3'8. ONE DAY I ASKED HER HOW OLD WAS SHE AND SHE TOLD ME 21. I JUST COULDN'T BELIEVE IT AND SO MY NEXT QUESTION WAS "WHY ARE YOU SO SHORT". AND SHE TOLD ME BECAUSE HER PARENTS ARE SHORT. WELL ME AND THE YOUNG LADY GREW TO BE GOOD FRIENDS AND THE QUESTION CAME AROUND AGAIN "WHY WAS SHE SO SHORT" AND SHE FINALLY ANSWERED HATS SHE HAD THE TURNER'S SYNDROME. I READ THE COMMENTS BEFORE I DID MINES. LADIES DON'T BE DISCOURAGE AND EMBARRASSED ABOUT YOUR HEIGHT. MY FRIEND IS ON THE STEP TEAM WITH ME AND SHE STEP IN FRONT OF EACH AND EVERYONE OF US AND ALL OF US LOVE HER TO DEATH. SO I ENCOURAGE YOU TO KEEP YOUR HEAD AND GOD WILL DO THE REST.

Ariel Martin's picture

well keep it up there are

well keep it up there are more ts ppl in alabama like me lol but keep in touch with he ok

Serendip Visitor's picture

I'm 16 have mosiac turners

I'm 16 have mosiac turners and do not feel like it affectw me too much. I'm 5' and took gh since i was two stopped when i was 14. I got my period when I was 14 and get it every month. As for having children I'm 16 so it is really is not on my mind but yes I hope to have one naturally, my doctor has told me if nothing changes from now to when I want to have a children i will be able too. I'm so sorry for those of you who have it alot harder. For parents I think to just treat your child normally do not let it take over your life, and you do not have to talk about it everyday.

Hopeful_Angel's picture

To all who have TS

I have read all of your comments and I couldnt help but cry. Ive recently had my test to see if I have it and I cannot lie to you, if it comes back positive then I will very much be gutted for the family side of it BUT reading some of your comments have made me realise that no matter if we have this or not, it doesnt change who you are as a person and from reading your comments, you are all lovely people. They told me that TS wasnt that common but finding this page and all these comments has made me reaslise that I am not as alone as I first thought. There are always ways for us to have children and I believe that we all will and we will make fantastic parents whether we have to go through IVF or even adoption. Every single one of us is fantastic and we can go through this together. You have given me such inspiration and I thank you all for that, you have given me comfort. Thank you xx

Beth Perley's picture

Turner's Syndrome

Hello,
I am a 54 year old woman with TS. I was diagnosed at 16. I have a wonderful supportive husband to whom I've been married for 27 years. God has blessed us. I told him when our relationship was starting to become serious. He was simpy amazing, and was very understanding. His attitude? "I'm not marrying you for children." If we could adopt, then that was more than fine. I just wanted to tell all the younger TS girls out there that it is possible to find a decent man, have a loving relationship, and lead a very normal life. We adopted our son when he was less than three months old. He is now 24, and makes us very proud. I also wanted to tell all the TS adult women that to please make sure you have ongoing care and monitoring throughout your life. We are at greater risk for many health issues. I should know. I am mildly diabetic and have a stent in my heart that was put in Jan. 2008. It is well worth the time and effort to do as much research on TS as possible. We have to be our own best advocates. We have to know more than our Dr's. I have tried to look upon TS as a challenge, a gift, and an opportunity, and not as a curse. My advice? Learn to live with it, deal with it, and let it help you to grow stronger in character. With a positive attitude, you will succeed. May God Bless all you wonderful TS sisters out there!
Yours Truly, Beth

Lea's picture

Ts and friends

Hi :) I am 16, and I have been diagnosed with ts since I was 13. Having ts has never bothered me at all, I am still me, wuth ts ot not. I am still taking growth hormons, and that has worked great on me, I am now 5.2 feet tall, not much smaller that the rest of the girls in school. My problem is that I have always been shy, and I have a wall around me that does it is very, very hard for me to connect to people and make friends. I don´t know what do do, how can I be the sweet open bubbly person I am at home, around others than my family? Do you have ANY suggestions, please tell me, I am so tires of being shy. Thank you.

Lea

Simmone an Emily's picture

Hi Lea! We are sophomores in

Hi Lea! We are sophomores in high school so we're around your age. We read what you said and it caught our attention. We realize how hard it must be for you to have Turner's Syndrome, but don't let that hold you down. You seem like a sweet, fun, and caring girl so don't be afraid to let everyone see that side of you. People who don't accept you aren't worth the time to impress. We only have one life to live so live to the fullest. Most kids at school are more accepting than you think, they just don't understand. If you open up and step out of your comfort zone just one time, whats the worst that could happen? You have nothing to lose but everything to gain. Keep your head up :)
Love,
Simmone and Emily

Elizabeth Montgomery's picture

Look at sites about nonverbal

Look at sites about nonverbal learning disorder and maybe be tested for it. They can provide great resources to help! I was diagnosed at age 9 with Mosaic TS and NLD at age 11.... educating yourself really helps! Good luck and hope this helps! :)

Serendip Visitor's picture

should I test my little girl for TS?

The only symptom she has is that she is short.

She is 2 and is 31 3/4 in.

What does everyone think?

Serendip Visitor's picture

I think it would probably be

I think it would probably be a good idea to get her tested, however, it may incur unneccesary medical bills if it turns out she doesn't have it so what I would do is talk to your doctor first to get their opinion. The doctor probably has your daughters medical background so knowing that I would also let them know all the reasons why you speculate your daughter may have the condition. Finding out if your daughter has this condition at this early of an age can prepare you for her medical and educational future which can definately be a good and beneficial thing. Being a turner women myself and finding out I had this condition at age 25 was kind of suprising to me. Finding out I have this condition didn't really change my life a whole lot but it did explain things for me. Well, I hope this post can provide you with some insight and I hope and wish the best for you and your child.