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Turner's Syndrome-A Woman's Disease
Biology 103
2002 First Paper
On Serendip
Turner's Syndrome-A Woman's Disease
Melissa Brown
Imagine that you are 13 years old. All your friends are growing: they are getting taller; they are starting to menstruate; they seem to know exactly what to say at the right moment. You, on the other hand, are conspicuously shorter than your peers; you don't have your period and you seem to blurt out whatever comes to your mind. You would probably feel that you are awkward and begin to develop low self-esteem. This could be the life of a teenage girl with Turner's Syndrome.
Turner's Syndrome is a chromosomal problem that affects one in every 2000 females (1). So in the tri-college community, there may be at least one woman with Turner's Syndrome (TS). Although, you may not know someone with Turner's Syndrome it can safely be assumed that you have unknowingly encountered someone with the disease because of the frequency of the illness. Turner's Syndrome is named after Dr. Henry Turner who described some of the features of TS like short stature and increased skin folds in the neck(1). TS is sometimes also called Ullrich-Turner Syndrome because of the German pediatrician who, in 1930, also described the physical features of TS (1).
Why is it that TS only affects women? Well, TS arises from an abnormality in the sex chromosome pair. In the human body, there are 46 chromosomes grouped into 22 pairs of autosomes (all chromosomes that are not the sex chromosome) and the sex chromosome pair which influences whether a girl has TS. Men have a sex chromosome pair that is XY where the X chromosome comes from the mother and the Y chromosome comes from the father. Women have an XX chromosome pair with one X chromosome coming from the mother and the other X chromosome coming from the father. However, a female baby who has TS has only one X chromosome or is missing part of one X chromosome (1). The female baby receives only one X chromosome because either the egg or the sperm ended up without a chromosome when it was being split in half to make sex cells. The baby girl may be missing part of one X chromosome because there is a deficiency in the amount of genetic material (4).
TS is determined by looking at a picture of the chromosomes which is
known as a karyotype. This technique was not developed until 1959(1).
Karyotyping was not available to Dr. Turner and Dr. Ullrich in the
1930s. These doctors defined the disease by the physical features that
a TS sufferer may have. Some of these are lymphoedema of hands and
feet, or puffy hands and feet, broad chest and widely spaced nipples,
droopy eyelids, low hairline and low-set ears. There are also clinical
ailments that are associated with TS like hearing problems, myopia or
short-sightedness, high blood pressure and osteoporosis. People who
suffer from TS also have behavioral problems and learning difficulties (1), (3).
In spite of the physical, social and academic problems that a woman
with TS may have, she can still be successful in life. Women who have
TS have become lawyers, secretaries and mothers. It may be more
challenging for a woman suffering with TS to accomplish her goals but
they are not impossible. TS is a "cradle to grave" condition which
means that it is lifelong and must be treated throughout the sufferer's
life span (1).
When the girl or woman has been diagnosed she should go under the care
of an endocrinologist who is a doctor who specializes in hormones.
There are various medical methods that could be used to make the girl's
life as normal as possible. Girls can have an average stature by
undergoing growth hormone treatment before growth is completed.
Oxandrolone, an anabolic steroid, can also be used to promote growth.
Oestrogen is used when the girl is about 12 or 13 to produce physical
changes like breast development and for the proper mineralization of
bones. Progesterone should also be used at the appropriate time to
start the period (1), (3).
Sufferers of TS also have problems like heart murmurs or the narrowing
of the aorta which may require surgery. Women with TS are more prone to
middle ear infections. If they recur frequently, they may lead to
deafness so a consultation with an ear, throat and nose specialist
would be helpful. Some of the health concerns of women with TS are
encountered by all women. High blood pressure afflicts women with TS as
well as diabetes and thyroid gland disorders but the latter afflicts
women with TS at a slightly higher rate than non-sufferers of the
disease. Osteoporosis may start earlier in TS sufferers because the
women lack oestrogen so HRT (Hormone Replacement Therapy) may be
considered to delay the onset of Osteoporosis (1), (3).
Women who have TS are further challenged socially because they are
disruptive; they blurt out whatever comes to mind and have difficulty
learning social skills. A recent study suggests that women with TS may
be more disruptive depending on whether the X chromosome comes from the
mother or the father. If the woman's X chromosome came from her mother
she has more problems learning good social skills than a girl whose X
chromosome came from her father. The study insinuates that the X
chromosome from the mother instructs the girl to misbehave while the X
chromosome from the father tells her to control herself (2).
A girl's disruptive behavior may make her feel uncomfortable in social
situations. Her discomfort increases if she has difficulty speaking
clearly. However, visits to a speech therapist can improve her ability
to speak well. Such behavior can be particularly detrimental in school.
Furthermore, people who have TS usually have learning disabilities so
they find school less appealing. Parents should present teachers with a
leaflet entitled "TS and Education, An Information Leaflet for
Teachers" which will help the teacher better instruct the child in
class and make learning a less burdensome activity(1).
School is where children and teenagers spend most of their time. For
girls who suffer from TS school becomes less welcoming during the
pubescent years when social, physical and academic skills are
increasingly important. Negative experiences can bring about low
self-esteem. Young women who suffer from TS should join a support group
where they can find allies and express their feelings. Alternatively,
the reticent girl can keep a journal where she can privately reveal her
concerns about her life as a TS sufferer. Parents who notice that their
daughter is being adversely affected by her inability to "fit in" with
her comrades should seek professional help (3).
There are many challenges faced by women who have TS. Some of these
challenges require a lot of medical assistance while others only
require small alterations to the sufferer's daily life. TS is not an
ailment that is intermittent or can be cured. The woman with TS lives
with the syndrome every day for the rest of her life. It is important
to remember that TS is not transmitted from person to person but it is
a syndrome that is borne out of chance; the possibility randomly exists
that a female embryo may not have two complete X chromosomes. Since TS
does not affect men it can be overlooked despite the frequency with
which women are born with it because we live in a patriarchal world.
We, as women, should be allies to highlight the diseases that only
women have.
References
1) Turner Support Syndrome Homepage,gives information about Turner's Syndrome to those interested in TS.2) Bizarre Facts in Biology, unusual biological information from recent studies
3) TeensHealth. Provides information about health problems faced by teenagers.
4) Endocrinology and Turner's Syndrome, gives information about how endocrinology is helping those affected by Turner's Syndrome.
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Comments
Resurce
I am 64 and wonder if there is any resurce to assist the small population of Seniors with TS
Is there a decreased imune System connected with TS?
I do have a hearin loss and wear glasses. I am now 4' 8"
I tend to get upper resperatory infections. Is there a connection?
Thanks
looking for some advice
Hi, I was diagnosed with turners when I was pretty young, I am 28 years old now, when I was 12 or 13 I was put on birth control to help with my estrogen and progesterone levels I believe, i would like to stop taking it and maybe try something more natural, has any one found anything else that would help? or is the birth control something i am going to have to take forever?
any advice would be helpful
Thanks
Ashley
Advise on use of Birth control pills.
Hi Ashley,
Thanks for asking that question. I am advising you to continue using birth control pills. Leaving it might cause you to have abnormal vaginal bleeding due to hormonal imbalance, at the same time you may have osteoporosis (weak bones) due to lack of oestrogen which is essential for bone development. You might also lose your feminine figure since oetrogen as well is the hormone which makes you the way you are. Please keep taking it as advised by your Doctor. The drug should be taken daily at the same time eg if you have been taking at 8pm, then should be that time daily. Taking at the same time will not cause any imbalance and therefore making you not to bleed abnormally.
Thanks,
Paul Too.
My TS daughter finally joins High school
Greetings to you all. My daughter did her national primary school exams, and scored well as per her level. The teachers dealing with special education (those handling children with special needs) placed her to study in a nearby secondary school within our area of residence. This a boarding school. I took her there yesterday, she was received well by the teachers and students. She was so excited to be there. I thank God that she got a school near home and it will be easy for me to reach her more frequently and just to see how she is doing and encourage her. Let us all joint hands and support persons with TS, they are going through many challenges. Paul Too.
I think I may have TS
Hello, my name is Olivia...I am from UK, my age is 19 and I am really short for my height about 150 cm and overweight about 82kgs. I have never started my periods but I have barely there breasts but I do have pubic hair. I was really small at birth even though i was only born a week early. My mum noticed my height stopped growing at the age of 13 when I looked about 8 around 144 cm and about 45kg and took me to the hospital and after a lot of blood tests and ultrasounds. They discovered my thryoid level is low and my ovaries and uterus is extremely small. They took me to another hospital were they checked my sugar level by making it dangerously high then lowered it down slowly.
When the results come back they diagnosed me with Growth Hormone insufficiency and Vitamin D Deficiency and gave me Injections to take everyday. I injected them everyday with ethyinestradiol and levothyroxine tablets. I use to meet my Doctor every 6 months and they use to check my growth level in which I grew like a inch everytime and weight increasing and my hips looking massive. I also saw an old report from my doctor sending it to other doctors who I saw in the recent years that Turner Syndromes were considered but my Chromosomes are normal but she never discussed it with me personally.
After 4/5 years of medications I am just at 4 feet 11 and my weight increasing abnormally. I recently was sent to the same hospital to give blood test for my sugar level, bone density exam and ultrasound were the nurse said my ovaries are still as small as they were 4 years ago.
I also checked the symptoms for TS syndrome and some of them match like eye abnormalities. My left eyesight was squint since birth but I had a operation when i was 8 and now I wear glasses full term otherwise everything seems blurry. I also didnt have much friends or confidence when I was younger and got bulied quite often for being a midget but I am quite a social person now even though it feels awkward meeting new people but once i get to know them then I become alright with them.
I have quite a few close friends now who are taller then me but I have been with them for the last 8 years. I did have numeracy difficulties when I was younger solving simple methods and now i think i have problem with long explanation mathematical questions since I keep getting low grades but I think I am fine with that now since I am in Uni and my course has nothing to do with Maths. The only subject I am good at is Marketing in which I got A* and some other Business Subject I get As as well. I also have short fingers and my thumb is barely reaching the end of my hand.
So right now I am not sure if I have TS or not. After all the internet research and not starting periods at all its starting to worry me. I am not sure if I should discuss it with my doctor since she already rejected the idea. Please help. Thank you for reading.
I would suggest you ask your
I would suggest you ask your doctor to do another karotype blood test to be sure
Olivia, I am 49 yrs. old with
Olivia,
I am 49 yrs. old with TS. And I also am 4' 11. I was diagnosed when I was 8 yrs. old. The Drs. did a chromosome panel to detect it. To my knowledge that is the only way you can definitively know if the person has TS. I was then at 14 started on Hormone Replacement Therapy. I would request a panel to ease your mind and give you a definitive answer.
I too have a little difficulty with numbers (which is an affect of the TS) but I also did well in other subjects. Of course I'm not a doctor but it sounds like there is a possibility of you having TS. I would request a chromosome panel. Good luck with your search.
Cheryle
My daughter with TS-Exam days.
My daughter was diagnosed with TS over a year ago. She will be completing her National primary school exams tomorrow -12/11/15. I thank God that she is very encouraged and happy. The exams is done in three days, and tomorrow is her third & last day. I took an off from my work place to be around to encourage & support her everyday before and after exams, and it worked very well. Her exam centre is five kilometres from where I leave, and I normally take her every morning and bring her back home after exams every evening. Being close to your child makes a difference in her life. Thanks all for your encouragements. God bless you. Paul Too.
Im 16 and living with TS. I
Im 16 and living with TS. I was diagnosed with mosaic turners at age 11. I didn't have many of the symptoms, except i was short (Im 4'11) and I'm bad at math. I am also socially awkward. I have amazing friends and am going to collage next year. I never took growth hormones, but still got bullied at school for being short. I've had two blood transfusions do to heavy periods. Im living generally normally. I love reading and shooting. It hurt a lot to read some of the things people have said about girls with TS. I refuse to believe that because of this part of my life i won't be able to work fro the FBI, or be a Nurse or anything else i may want to do with my life. God's been so good to me and has giving me so many gifts.
Be brave and stay beautiful.
Question for Sayde
Hi, my daughter Meghan is 15 and has multiple challenges due to Turner's Syndrome and Autism. But the reason I'm writing is because you mentioned you've had 2 blood transfusions due to heavy periods. I'm curious if you could tell me more about this because we're dealing with very heavy bleeding that we've yet to get under control, in spite of being on very high doses of Estrogen. Are you on Estrogen and is this something that is the result of the treatment? We're right in the midst of trying something but if it doesn't work my daughter might have to have a D&C. Would you mind sharing a little more about why you had that problem?
Thanks/
Thanks for your post
I really enjoyed what you said. I support you full-heartedly. Go after your dreams! Join the FBI and do all the things you want in life that are good. Break social norms and be a great example for all of us :)
Living your dreams
It is pretty hard when you do all you can to live your dreams and can't hold down a job. I worked so hard to get through college, studied so hard to pass the CPA exam and employers say I work to slow. It hurts so bad to be rejected like this.
Turners and severe anemia
Hi there,
My 13 y/o was diagnosed with turners mosaic in September. Everything is just fine, except she has such long and heavy periods that she has developed severe anaemia. Has anyone else experienced this and might be able to speak to it? So far, all we have done is supplement her iron, and put her on birth control with an eye to stopping her periods altogether. It isn't working well and I'm very worried for her.
Tia
Heavy Too with Severe Anemia
My daughter is also having heavy periods and was even hospitalized 3 weeks ago because of it. We're still trying to get it under control and in my daughter's case she's 45X0, no mosaic. I finally found a pediatric gynecologist that has knowledge of Turner's so I'm hopeful she can help. We've been doing the birth control pills too but without much success. We might be facing a D&C if what we're trying at the moment doesn't work. My daughter also has some cognitive issues and touch of autism which makes the logistics around this really difficult. I see that you posted back in March. If you have any new insight since then I'd love to hear about it.
Thanks.
Mary
Hi Mary, I believe your
Hi Mary,
I believe your daughter has been taking the birth control pills at the same time daily. This due to the fact that if not taken at the same time daily may cause abnormal vaginal bleeding which is caused by hormonal imbalnce. Try taking the pills at the same time e.g. if it is 8pm then should be that time daily.
Thanks.
Paul Too
Heavy periods
Hi Mary, it has taken six months for iron levels to improve, another six months to bring them up to normal... We ended up tripling the birth control dosage to stop her periods and a high dose of liquid iron. She will be fine... I hope you don't have to go the d&c route, how awful a thought! I was worried we would be facing similar issues. We see a Pediatrics endocrinologist who has been a tremendous help. More so than any of the other doctors we've seen. Best wishes
I am going throw the same thing
hi my name is ariel i found out i was deaf when i was 2 year born with nerves damange and also i found out i had turner when i was 13 and now im 23 and health do not get her on any growing pill let it do it natural yes i was short threw school my goal was to hit 5 feet 1 i hit it by my senior year but tell her that she will be ok i do go threw the same period to it dont come as usaual for us turner if the doctor said she is health as a button then she is dont get her on any med. that will affect her life in the future plus be there for her.
Ariel
Need Advice
Thanks everyone for the encouraging words. My daughter TS, diagnosed last year. She is generally doing fine healthwise. The only problem is that she is emotionally disturbed, has trouble making friends. Most of the time she is withdrawn, I keep encouraging her, being close to her always, but occassionally doesn't respond to me or other family members when asked some things or comment on something. She is struggling in school, does poorly in maths. Her self esteem is low and I am getting worried.
She will be doing her certificate of primary education exams this year. This is a national exam in Kenya.
Any advice on how to encourage her?
Thanks all for your nice comments.
Paul Too.
What should I do? What options do I have?
Hi everyone I have a daughter who was diagnosed with Turner Syndrome I was 4 months pregnant when i found out. She has been on growth hormone injections since she was 2 and also taking thyroid med every morning. She is going to be 12 in July and she will start Middle School.. She is still having a hard time learning she still is having a hard time reading and she is sick at least 4-6 times in a 3 month span. So she misses a lot of school she is doing better now but I don't know how I go about getting her Home schooled until at least she can be learning at her grade level. The school she goes to now would call her Doctor and complain about her always being sick and missing so now when she is sick the Doctor will not see her sometimes and then say she can go to school, I'm not putting my daughters health aside because a school is mad. I tried to get the Doctor to sign off on having a teacher come to our home and teach her but he will not comply. My daughter is in counseling going on about a year because she was getting bullied in the ADAPT/PALS class and they didn't want to do anything about it she was real depressed. My daughters mentality is normal age maybe even older its just her learning and she is so social and nice and talks to everyone. I feel so bad for her because I hate hearing her come home and say the teacher yelled at me or got smart with me because I was sick last week and he said oh good you finally made it back to school.
turner
Hello when you say she is sick , what is she getting? My daughter has turner also?
I had a babyyyy
Hey guys my name is Katie, I posted on this thing back in 2011 explaining about my mosaic turners,
When I last wrote on this I was 18 years old explaining about how mosaics can lead a normal life.
I really hate the negativity based on Turner syndrome / mosaic turners too, my specialist told me I would never start
My period without help, guess what.. At 13 they started naturally. I last posted on here when I was 18 wanting to give support to other turner girls
They say turner girls can't have children guess what, when I was 18 a few weeks before I found this page, I met a guy, one night we had sex just once I had just lost my virginity I slept with the guy one damn time I didn't see him again as he lived in London one month later my period stopped because of turners I didn't ever think I could be pregnant, I never really got a bump I got a little swollen n was quite sick but it still wasn't enough to make me notice i stayed working in a busy call centre, on May 23 2012 I went into hospital in the night because of turners they never suspected a thing, I gave birth that night. To a 6 pound 5 and a half ounce beautiful baby boy. They say mosaic girls are not fertile, yet the night I lost my virginity I also caught pregnant, after a few minutes first time catching pregnant okay I guess I'm extreamly lucky yeah, I'm not boasting I know God is with me it was a blessing I'm trying to give you girls hope, I listened to negativity and doctors and internet pages that display the horrors of turner syndrome and I cried gutted upset with what my life was and what the Internet says us turner girls can and can't do, it's lies. listen to your heart, I'm a mosaic and more fertile than friends who have tried for babies and they don't even have Turner syndrome so please smile and let this give you hope any things possible xx
your story motivated me
Hey katie I just wana say that your story has been a true inspiration to me. I was also diagnosed with turners mosiac and I am currently pregnant I was shocked when I found out as prior to this I had a miscarrige and did not know I was pregnant till I miscarried.after the miscarriage I believed the horror stories about turners that spontaneous pregnancies will end up in miscarriage,still birth or abnormalities. I am 29 weeks and ultrasounds have detected no abnormalities. I really hope I will have a healthy delivery and baby thank you so much once again. Having turners really does not mean that your life will be a standstill. I am alos working graduated and independent so I know I can provide for both me and my child. So if you have turners you really are just as capable of achieving anything just like the average normal person
My 5 year old was just dx ts
Hi thank you so much for your post. My child was just diagnose as turner syndrome, this is all new to me. I am staying positive. I just got home from her abdominal ultrasound. Her kidneys and pelvic were checked and I can't wait for the results. My daughter has never had any problems, only frequent ear infections and she has always been small. She will be starting the growth hormone soon. I am terrified I don't know how to explain to her that she will be needing daily injections. She is very smart and ask a lot of questions. I am heartbroken.
Thanks so Much for sharing!!
I have a 30 months old daughter with TS and as I read your story my heart was filling up with hope. May God Bless you and al the girls W/TS
Just learned my daughter might have TS
Hello!
I am currently 15 weeks pregnant and just learned that my daughter might have TS. My husband and I are scared for her future. I have heard that even after the 1st trimester, miscarriages are quite high with TS. Does anyone happen to know the percentage of miscarriages after the first trimester? Right now, no indications are showing on the ultra sound. The only way we learned of the potential for TS was through a genetic screening called Verifi. We are also very concerned about the medical issues she may have is she makes it through this pregnancy.
Daughter with Turners syndrome
Hi,
I am a Kenyan and a father of three. I lost my wife due to cardiac disease two years ago. One of my daughters ( Sharon - 15 years) was diagnosed in January 2014 with Turners Syndrome through Karyotyping test. Other tests reveal that she does not have the uterus, Ovaries and Vagina as per the Ultrasound. X-ray was taken and reveal that her bone growth plate is not yet closed and the Doctor recommended that she be given growth hormone for two years. The growth hormone is difficult to get in Kenya, the only hospital which has is Nairobi Hospital. The hospital sell it expensively Ksh 36,000/= (414 dollars) per week, which is equivalent to my one month salary. I didn't afford to buy. My daughter weighs 29 kg and has a height of 129 cm. She has low self esteem because of seeing herself different from others. Please I need someone to help me with advices, I am scared about her future, especially after reading and knowing more about the condition. Thanks,
Paul.
Diagnosed with Turner's Syndrome
Hi
I am Kenyan and have been trying to find out if there are other Kenyan children with the TS syndrome and how I could possibly meet their parents so that we can share our experiences.
My niece who was born in 2001 was diagnosed with TS in December, 2016 through Karyotyping test.
She is 4" 1 inch, weighs 31 kgs and has no ovaries. Her mum, my late sister, passed on in 2007 and I took over the parenting role and am bringing her up. I noted from when she was 4 years that she was much smaller than her age group and when I took her to Hospital I was told she was normal and there was nothing to worry about. However, by the time she completed her primary school I did not see much of a change in her growth so I decided to get full tests done including the ultrasound. I have the same dilemma in that the growth hormone is too expensive to afford and of course not covered by Insurance. However, she is on estrogen pills which she takes daily.
She has always been a very confident and bubbly girl, until she went to high school and noted the way the other girls treated her. She then realized that she was different so her self esteem went down and her grades drastically dropped. It is not easy and I would like to meet other Kenyan parents who have children with this condition.
Connection with people with TS in Kenya.
Doreen, I read your story and happy that at long last I have found someone with the same problem in Kenya. Please use my email, paul.too32@gmail.com to communicate to me for further consultation. My daughter who has TS is now in form two and that she looks happy. Thanks.
Turner syndrome
My deepest heart felt condolences for your wife , and you and family , & then for to find out your daughter has TS & worse you cannot afford the medicine?. This is totally wrong , . Can i suggest , there is a couple of charitable organizations, That should be able to help, 1 is GOFUNDME.ORG, Its a site , and you can ask people to help with your cause, and right now that is your daughters welfare, + am sure there has to be other ways that your daughter can be helped , even if it means flying it in especially. I hope this helps in some way or leads you in the right direction , to get the help your daughter need`s. My daughter was not diagnosed till she was 13, and has no , Ovaries , & has some temper & is now also 30 years old . All the best to you and your family :)
Dear Paul I just wanted to
Dear Paul
I just wanted to share my story, as a grown woman with TS
I was diagnosed when I was 13 and had quite a hard time with self esteem, etc as a teenager. I'm now in my early 40s. I am mosaic so I'm quite tall for a Turners woman (150cm) although I never took growth hormone. I take the contraceptive pill every day for oestrogen. I am infertile though and unmarried (though the second one I can't blame entirely on the TS :-) Apart from that though I am doing fine! I finished my phd in 2008 and I'm a university instructor. I have plenty of friends and a good social life. My health is not bad and I'm very active and energetic although I suffer from Hashimoto's thyroiditis (common in TS girls and women)
I think that if you support your daughter and give her confidence, and love her while accepting she's a bit different she will be fine
Turners syndrome
Hi Paul. First let me introduce myself. My Name is Tammy and I have a 17 year old with Turners Syndrome. I am very sorry to hear about your wife and your struggle to get growth hormones. This saddens me a lot but I do believe she will be ok in other ways of Turners. Was her heart and kidneys tested?
I found out that my daughter Isabella has Turners when she was 2 years old. That was 15 years ago. The Internet wasnt a possibility for me to access any kind of information. I will never forget the day I was told. I was in shock. How? Why? What happened? I was lucky enough to have a nerologist with few papers to read and get the proper tests. She was on gwroth hormone replacement for 12 years in the form of a shot. I gave it to her everyday to make sure she was going to grow tall... Well she is 4foot 9 inches and that's her maximum height and She weighs 100 pounds. She has had problems with making and keeping friends, some trouble in Math and also some behavior problems. There is a Internet site named "TurnersSyndrome.org" they may be able to help you medically with advice. This I am still learning for myself as I am beginning the phase where I have to give her estrogen patches and she has recently gotten her menstrual cycle ( period ) for 3 months now. She did get tested for her strength in bones and she is lacking Vitamin D and Calcium very much so. It's worrying the doctors. I have to give her some vitamins to supplement the lack of her having these.
Is your daughter otherwise healthy? Can she access a computer? How is she with friends? My daughter Isabella could maybe talk to her about the low self esteem issues. As Isabella has many of them and has overcome many as well. From what I was taught years ago, girls with turners syndrome do not act their age. Example meaning Isabella is 17 but she acts to be 12 throughout this year. Sharon is 15 she may act 11 or 10. This is something I was told from professionals on turners. That the girls will always behave or act like they are 5 years younger than their ages. I hope I helped in some way. If u need any help of any kind for Sharon and yourself for someone to talk to or ask questions you can contact me and I would be happy to help in anyway I know how. Keep your head up and faith.
Sincerely, Tammy
Hi Paul my name is
Hi Paul my name is Katie
Sorry to hear about your wife,
Thoughts and prayers are with you and your family
With Turner syndrome, it sounds scary.
I have it :) I'm 21 I have a little boy. I had him naturally
No IVF no nothing.
I have a job and a family and hopefully my own home this year.
Im sorry about the money situation but I hope my message has given you hope
That your daughter can lead a normal healthy life with Turner syndrome
I'm living proof, if you need any questions answering just ask :) i'll do my best to answer as
Honestly as possible.
Katie xx
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?!
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.....
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?
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.
Hey girl, I also have TS
Hey, I would love to chat with u so time we had the same struggles growing up :)
ts
My daughter had ts and very similar to yourself.recently ré blood tests she is vit b.13 and vit d deficiencient.guidelines ate misleading as in turners there is absorbtion problèms causes by intrinsic factor anti bodies .every cell in your body needs b12 and d .deficiency is auto immune disorder.am trying to get vit b12 methylcobalamin with folate for my daughter and told she will need to have it fof life.Please get you b12 and d checked.go to pas society,heart foundation and nice web sites and learn about it.you need to support your immune system and prevent détérioration.bestest regards.love Sie.x
My granddaughter was just
My granddaughter was just diagnosed at 2 . She exhibits little symptoms. The ones you describe fits ME and not her. I am a lawyer and 5'8, and let me assure you that you will do great !! Enjoy your life and profession and get the right treatment, physically and emotionally . You seem like a winner to me.
ts
Like you i have mosaic ts minus d learning difficulties and am confident i never received hormone treatment started period at 13 with me my periods do not end ever so i was on mini pill and clot agent to try plug period some yrs bk i suffer d low esteem internally
I was four eleven but shrunk have teeny breasts and excessive body hair over lip under chin arms and legs
Drs have no clue what mosaic turners is
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
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.
I feel u I also have TS
Hey , I felt the same way we should talk email me:)
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
Mosaic Turners
You said you were tested for Turners and were "negative". Is there a seperate test for Mosiac? The reason I ask is my almost 18 y.o.daughter has some of the symptoms (delayed period and growth, 2 yr lag in bone age,learning disabilities, irregular periods, 5'1"). She had a blood test that was negative for Turners. Ultrasound showed uterus and ovaries. Were you tested by a genetisist? Thanks for sharing your story.
ts
i am bit older than 50 but not 60 i was just been diagnoised turner sydrome it was a bit of a shock
i do not no what to expect ,it was found last year after i was addmitted to hospital with heart mummer they ran quite a few test and found i had a hole in my heart they had to go through open heart surgery this year because of it i also lost a kidney due to it 15 years ago they say it all connected to the turners sydrome i have sisters and they are all clear no signs at all and iam not small in height i 5,8 just want to what happens from hear on in as i get older.
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
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..
turner syndrome
guys don't have turner syndrome
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.