Turner’s Syndrome – Pictures, Symptoms, Causes, Treatment, Life Expectancy


What is Turner’s Syndrome?

Turner’s Syndrome or gonadal dysgenesis is a condition that affects females in which one of the sex chromosomes (X chromosome) is completely missing or has abnormalities. A normal female has 46 chromosomes, including 2 X-chromosomes (44XX). With Turner’s syndrome, the female patient only has one X chromosome or has an abnormality in one of the X-chromosome. Some conditions only have a missing X chromosome in some cells, but not others. This condition is called Turner’s mosaicism.

Turner’s syndrome occurs in 0.05% of the female population. It is a genetic disorder that usually affects the sexual development of females. Several physical abnormalities are noted with a distinct short stature, webbed neck and low-set ears. Since the X chromosome is affected, there is a gonadal dysfunction or the ovaries do not work, leading to infertility and absence of menses (amenorrhea). Aside from sexual dysfunction, individuals with Turner’s syndrome have cognitive limitations specifically in memory, mathematical and spatial skills.

Since the gonads develop in the same germ layer as other organs, Turner’s syndrome is often accompanied by heart and kidney problems.

History of Turner’s Syndrome

It is named after an endocrinologist who first described it, Henry H. Turner. Turner’s syndrome is commonly called Bonnevie-Ullrich-Turner syndrome or Ullrich-Turner syndrome in Europe because early doctors there also described the disease. The first case of Turner’s syndrome was a 45X karyotype in a 14 year old girl from London.

Causes of Turner’s Syndrome

Predisposing factors for Turner’s syndrome remain unknown. Genetics play a part in the occurrence of the condition. About two-thirds of the cases have inactivated X chromosome, which is paternal in origin. The main cause for Turner’s syndrome is still being studied, but some theories support its development. One theory is that during conception a part of the sex chromosomes is not passed on to the female fetus. These females do not have Barr bodies (part of the X chromosome) which leads to the absence of one X chromosome or incomplete X chromosome.

Turner’s Syndrome Symptoms

The defect in the sex chromosome often leads to the following manifestations:

  • Webbed neck
  • Short stature
  • Broad chest
  • Shield shaped chest
  • Lymphedema or swelling of the feet and hands
  • Wide-spaced nipples
  • Low-set ears
  • Low hairline
  • Sparse pubic hair
  • Rudimentary gonads (ovaries) which eventually become fibrosed
  • Dryness of the vagina
  • Infertility
  • Amenorrhea or absence of menses
  • Short metacarpals
  • Overweight
  • Small, soft fingernails
  • Micrognathia or small lower jaw
  • Narrow maxilla
  • Turned-in elbows
  • Dry eyes
  • Drooping eyelids
  • Pigmented moles
  • Poor breast development
  • Coarctation of the aorta
  • Structural defects of the aortic valve
  • Misshapen kidneys (horse-shoe)
  • Smaller hips or have the same size as the waist (poor hip-to-waist- ratio)
  • Poor concentration and memory
  • Poor attention
  • Hyperactivity
  • Learning disabilities
  • Dyscalculia or difficulty in math
  • Poor spatial skills
  • Poor social skills

The occurrence of symptoms is usually different for each female patient. Until now, no two females with Turner’s syndrome have shared the same set of symptoms.

Turner’s Syndrome Diagnosis

Turner’s syndrome can be diagnosed at all stages of life even during fetal development. Turner’s syndrome is usually diagnosed before birth through amniocentesis. Chromosome analysis is done with the specimen. The condition may also be seen during ultrasounds where an abnormality in the kidneys and heart is detected. When Turner’s Syndrome is detected before delivery, parents undergo genetic counseling to help them cope with the condition.

To determine the exact genetic problem in an individual female, karyotyping is done. Karyotyping is the analysis of the chromosomes and chromosomal compositions of an individual. A blood examination is also carried out to determine levels of follicle stimulating hormone and luteinizing hormone. These hormones are usually affected by the change in estrogen levels.

The physician also does a physical examination to determine any underdevelopment or abnormality in the body parts such as the breasts, hands, fingers and feet.

Other diagnostic tests are also done to determine any complications and underlying conditions of the heart, chest, kidneys and reproductive organs. Echocardiogram, MRI, pelvic exam and ultrasound of the ovaries and kidneys are done to determine these conditions.

Treatment of Turner’s Syndrome

The genetic abnormality in Turner’s Syndrome has no cure. However, certain supportive treatments can be done to correct the symptoms. These include:

Growth Hormone Therapy

Growth hormone enhances bone growth to let girls with Turner’s Syndrome reach an average height and treatment may start as early as in the toddler years. It is approved by the Food and Drug Administration for the management of Turner’s Syndrome. When this is not given, females only reach an average height of less than five feet.

Estrogen Replacement Therapy

Sex hormones are usually given to improve sexual development. Estrogen therapy is usually administered starting at 12 years old. It improves breast development, pubic hair growth; and increases the width of the pelvis and the development of other secondary sex characteristics. Estrogen is also essential for bone and tissue health. Individuals with Turner’s Syndrome who do not receive estrogen therapy are likely to develop osteoporosis. Estrogen is also important for uterine maturity when a woman wants to bear a child.

Assisted Reproduction Techniques

Physicians also assist the woman with certain reproduction techniques to help her become pregnant such as the use of donor eggs. These turn into embryos which are then carried by the woman with Turner’s syndrome.
The treatment for Turner’s Syndrome relies on improving the growth and sexual functioning of the woman. Since the condition is associated with chromosomal aberrations, there is no current cure to completely eradicate the condition.

Turner’s Syndrome Prognosis

Turner’s syndrome is a lifelong condition. The patient can usually have a normal life if treatments are carefully monitored. Symptoms of the condition are not harmful for the patient, but certain underlying conditions may contribute to mortality in some cases.

Turner’s Syndrome Life Expectancy

Females with Turner’s Syndrome usually reach 50 years of age. The reduction in life expectancy is up to 13 years. However, when complications are not detected, patients often die at an early age due to kidney and heart problems. A fetus having the condition in the uterus often ends up as still born or spontaneously aborted during the early stage of conception because of the congenital anomalies.

Genetics

Humans have a total of 46 chromosomes including two sex chromosomes. These chromosomes contain the genes and DNA responsible for building the body. The sex chromosomes indicate the sex of the person. Females have two X chromosomes (XX) while males have one X and one Y chromosome (XY).

In Turner’s Syndrome, there is a defect in one of the X chromosome of the female; either it is absent or has defects. The most common karyotype of individuals with Turner’s Syndrome is 45XO or a non disjunction of the chromosomes. In these cases, there are 44 chromosomes with only one sex chromosome (44 plus one is 45 – written as 45XO, the O signifies the absent X chromosome.)

During conception, the sex chromosomes are not transferred properly leading to the condition. Genetic counseling should be done with parents with an offspring with Turner’s Syndrome, although recurrences with following pregnancies are usually low.

Complications of Turner’s Syndrome

Complications of Turner’s syndrome are commonly associated with the organs that develop in the same germ layer as the reproductive organs such as:

1. Heart defects – Cardiovascular complications or congenital heart defects are the number one reason for mortality in patients with Turner’s Syndrome. Reduced life expectancy is associated with these complications. Up to 45% of patients with Turner’s Syndrome have congenital heart problems.

Obstructive lesions in the left side of the heart are commonly seen which significantly reduce the blood flow in the heart. The most common congenital heart anomalies include post-ductal coarctation of the aorta, bicuspid aortic valve, partial anomalous venous drainage, aortic valve stenosis, aortic dissection, dilatation and rupture and hypoplastic left heart syndrome.

2. Diabetes – Diabetes is a potential result of obesity in Turner’s syndrome. Type 1 diabetes can also occur during childhood as a result of affectation of the cells in the pancreas that produce insulin. Diabetes can be prevented through weight reduction.

3. Kidney problems – Kidney abnormalities include abnormal kidney tubules, a horse-shoe kidney, or a poor renal blood flow. About 30% of women with Turner’s Syndrome have kidney abnormalities. Kidney problems are often corrected through surgery although the kidney problem does not often result in serious conditions.

4. Scoliosis and Bone Fractures – The normal skeletal development is affected due to inadequate synthesis of estrogen. This results in osteoporosis and eventually scoliosis because of the exacerbation of the curvature of the spine. Bone fractures may also develop as a result of osteoporosis.

5. Thyroid problems – Individuals with Turner’s Syndrome may also develop hypothyroidism such as Hashimoto’s thyroiditis.

6. Infertility – This results from the underdevelopment and fibrosis of the ovaries bilaterally. It is often corrected by supportive treatments such as egg donation from normal women.

7. Cognitive Problems – Individuals do not experience mental retardation, but only learning disabilities or non-verbal learning disorders. These include poor spatial skills, memory and math skills. These difficulties often lead to problems in everyday functions although most adults with Turner’s Syndrome may lead productive lives.

A special type of Turner’s syndrome, which is Ring-X Turner’s Syndrome, may lead to mental retardation. This type accounts for up to 4% of all cases of Turner’s Syndrome.

Other complications include obesity, high blood pressure, cataracts and arthritis.

Prevention

There is no known way to prevent Turner’s Syndrome because the exact cause and risk factors are still unknown.

Pictures

23rd chromosome missing in Turner’s syndrome

23rd chromosome missing in Turners syndrome

characterstics of turners syndrome

Picture 2 – Symptoms and signs of Turners syndrome

Image source – mun.ca

broad shied chest Turner’s syndrome

Picture 3 – broad shield chest in Turner’s syndrome

Image source – wikia.com

puffy feet in turners syndrome

Picture 4 – Puffy Feet in Turners syndrome

Image Source – wikimedia.org

Turner’s syndrome baby

Turner’s syndrome baby Photo

Image Source – Turnersyndromepictures.com

hand in Turner’s syndrome

Updated by Andrea at 11.50pm on 23/8/12.

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60 thoughts on “Turner’s Syndrome – Pictures, Symptoms, Causes, Treatment, Life Expectancy

  • 17/05/2012 at 8:28 PM
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    I have a variant of Turner’s syndrome. I was on estrogen replacement until a couple of years ago. I am going on 52 and in good health. I recently had a hysterectomy. I never had children.
    I have been hurt emotionally because of some people’s ignorance.
    I had I guess you could say a bf when I was l7. We were friends, and I started wanted more, and for a while I think he did too, but I think he was afraid of our families and people might say. We experimented with sex (not intercourse) Also, my family was very protective and he was a couple of years younger than me. We stopped seeing each other as often because his family moved into town. Anyway, he met someone else and started dating her, and she got pregnant when he was l7. I was married and my ex-husband couldn’t deal with our infertility. As a result he became emotionally abusive, and again his family particularly my ex’s dad added fuel to the fire by making little comments that I wasn’t capable of doing and learning certain things. He met another woman and got her pregnant. We divorced in l989. I’ve had a common-law spouse since 1991, and he was diagnosed with c.o.p.d approxiamately 3 years ago.

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    • 26/10/2012 at 2:17 PM
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      Being infertile simply doesn’t mean u have Turners syndrome.

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  • 14/08/2012 at 5:39 AM
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    The life expectancy given is inaccurate on 2 accounts to say turner girls live into there 50s is wrong it is significantly higher and in most cases normal life expectancy, and if this is the case reduction would be far more than 13 years!! Get your facts straight!!!!!! This article is wrong and will promote fear in women with TS .

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  • 14/08/2012 at 9:28 AM
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    I am a 23 yr old wife of five yrs…my husband and I lost our daughter in june 2011 to turner syndrome…difficult thing to experience…

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    • 16/08/2014 at 12:26 AM
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      I can only imagine. I’m so very sorry for your loss. I was born with a different birth defect. Mine is typically easier to cover up, but *nobody* – husband included – knows how much I struggle. I still would never change a thing. There have been blessings among those struggles. Just realize that your daughter very much appreciated everything you did for her. God bless you, Myka.

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    • 25/11/2015 at 8:02 PM
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      I am so sorry for your loss. I can’t even begin to imagine what you’re going through. I wish you’re baby was here with you. I am 34 yrs old living with Turner syndrome. I count my blessings everyday that I am so healthy. I’ll pray for your family!

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  • 15/09/2012 at 7:24 PM
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    I ;personally will support my new student with TS. she is amazing and clever.

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  • 01/10/2012 at 9:11 PM
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    Hi, I am 20yrs old and 15 weeks pregnant and just found out my unborn child has turners syndrome..im so scared but i have realized it could be worse. Idk what to do or expect :(

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    • 26/10/2012 at 11:02 PM
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      Hello. I am 50 years old, I live in Charlotte, North Carolina, and I have Turner Syndrome.

      I got my diagnosis when I was 14. It was the 70s, so there was no support back then.

      Every girl or woman with Turner Syndrome is different. I am what they call a Mosaic; some of my cells are normal, some are not. I did not have any of the heart problems that can occur.

      Where do you live? Do you have a place to get genetic counseling? When I got diagnosed, it was by an endocrinologist. Have you found the Turner Syndrome Society? They do a lot of work with children and families.

      I have had some hard times, it’s understandable that you are scared. But I have had a fairly normal life. I finished school. In general, Turner Syndrome women are big readers, though we have trouble with math. Your daughter may be imaginative and creative (I try to write poetry and fiction). If you and your daughter get all the love and support you can find, you will do fine.
      Best, Mary B.

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    • 03/02/2013 at 9:57 AM
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      My four year granddaughter has Turner syndrome and she has most of the symptoms. But I have to tell you she is the light of my life. She is smart funny has a sharp wit and everybody that meets her can’t believe she’s four cause she looks like two. When she started walking at a year people did double takes because she looked like she was 5 months! Funnier even when she spoke! Out of my 8 grandchildren she is the toughest smartest enjoyable granddaughter! Do not be afraid. They exhibit a resiliency that is rarely seen. I adore this little one. As fat as stature she looks like a mini gymnast and plays like one too! You r blessed!

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      • 17/02/2015 at 9:09 PM
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        I realize your post was 1 1/2 years ago, but I just saw it. I pray all is well with you and your family. My daughter has Turner’s Syndrome and she will be 42 years old this week. She is and has always been the joy of our lives. Your granddaughter and my sweet girl sound so much alike when she was that age. We were reminiscing last night about how people thought she was so much younger than she actually was. She graduated from college and went on to do another course at SMU in computers. She had been married for 13 years to a great guy. Everyone loves her and she lives a completely normal life. Better than normal. She has had health issues along the way, but she is doing wonderful. She was the first of her cousins to go to college and she worked while going. God had blessed her with a beautiful voice, a gift. I will leave you with a funny story. After being told she would not be able to do math when she was a baby, which by the way we never told her, she was awarded 8th grade Outstanding Math Student. I want to encourage you that your granddaughter is full of all the promise that life had to hold. But, I know you have already discovered that. God showers them with so much love. Blessings to you and yours.

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        • 29/11/2015 at 3:44 AM
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          I have a daughter who is 43 with TS. When she went for her physical for starting first grade they told me that she wasn’t normal on the charts for height. I asked if this was a problem and they said no. The Pediatrician we saw at that time said “Oh you Americans think if you not so tall than something is wrong but Mom you are not tall in stature” I was 5′ 5″ and we had other family members who weren’t much taller so we didn’t think much of it at the time but of course we had not heard of TS. School nurse sent home notes regarding height and so I saw the Pediatrician again to see if any problems and she said no. So by age 15 when my daughter hadn’t gotten her menstral period than I thought something must be wrong due to the fact I was 10 & other family members were young also when they started so I made an appointment with a gynecologist. She had blood tests done and that was when we found out she had TS. I had no idea of symptoms to look for or what it was. The doctor set her up with a endocrinologist at the university in our state. Again tests were done and that is when we found out what symptoms and problems TS has. The short stature of course had been an issue of making fun of her plus she even had a music instructor not allowing her to be a drum major because she was too short. She said she was very capable but not tall enough. I remember her being hurt by that. That instructor also tried to take her partner in the swing show from her because he was so much taller than her. Fortunately this young man said he would not dance with the girl the instructor wanted him too but she did make the ruling the next year they had to be close in height. I was
          young and stupid and should of went to the school board but didn’t want to cause my daughter anymore hurt feelings. She did not play sports but did excel in music and school work. She was a straight A student and a honor student. Her best subjects were math and sciences. She received the Presidential sholarship at the college she went to. She graduated in accounting and business. She didn’t let the 4’9″ hurt her. She maintained a job through college and had to struggle with remarks of height throughout life. She is such a kind, caring and lovable person and there isn’t too many people who didn’t like her. She married a nice guy but we think that after 15 years of him not helping and not wanting to adopt —- I think she just couldn’t take it anymore. They parted as friends and still talk. During that time she got her masters in business receiving a A. something. She is determined and does her best to please those she loves. She worked for a Credit Union and for GE Capital for over 20 years total. So the one thing they said she wouldn’t be good at ====she is—-math and sciences. She hasn’t had a lot of health issues but of course she is not one to discuss problems with health. I ask and she tries to explain. I know she is on a regime of some kind of medication for TS. The hormones are expensive plus she said they are not approved but have been used for several years and work on many women.
          She was having loss of hair, heart palpitations and some other symptoms and they said her level was so low it was dangerous. Whatever she does now seems to have it under control but because not approved she has to struggle to pay for them monthly. I was wondering is anyone else has had problems and medicines used and what they have been told about their future. We love her so much and she knows we are there for her. At this age what is expected or what should she or we be helping her with. Thanks.

          Reply
    • 29/09/2013 at 8:57 AM
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      I have a little sister with Turners. She graduated from the University of Georgia with a marketing dergree. She is the best thing that ever happened to me. My little brother was born just a year and a half after her without any genetic anomolies. They are both the coolest two people I know. My Mum always made sure she never treated my sister differently and she used numerous flash cards to teach us everything she could. My sister is the only person in our family with a college degree. She is alomst 31 now and a very deep loving person. If you have any worries or questions, please email me.

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    • 16/06/2014 at 10:52 PM
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      Get in touch with the Turner’s Syndrome Society of America. Meet some adult ladies with Turner’s Syndrome.

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      • 27/06/2014 at 7:33 PM
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        How do I cope with this disease? I am 15.

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    • 31/07/2014 at 1:34 AM
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      I understand your anxieties…when we dream of having a baby, we do not dream of them being different in any way. But many are, and what others need to know is that is o.k….so it won’t be exactly what you thought it would be like….it could be better! TS children (and adults) are generally well-adjusted and possess a happy disposition. many lead sucessful, happy and productive lives. My best friend of 40 years has TS and she is the most wonderful, beautiful person I know. I couldn’t imagine life with out her to learn on, have fun with, and talk too. She is intellegent and witty and oh! so cute! She has many good friends and teaches special education, touching the lives of many with her loving ways. She is amazing, and in my opinion, perfect. TS persons are not so different, all of us have strengths and weaknesses….with your daughter having TS, you’ll just know more about what those may be for her. Do not be afraid, learn all you can learn about it so that you’ll know what to expect more, and just be prepared to fall in love when you see her…she will be perfectly imperfect, as we all are….she will bless many lives if you can focus on her strengths and not her weaknesses…she will learn to do the same. I would tell any mom that…with any child. p.s. do not worry about the 50 yr thing…my bf is 64 this year and we are celebrating by going to NYC to PARTY! she is healthier than I am and runs rings around me!She is the life of the party and always the light in the room. You are blessed with this child…she will be wonderful. God bless you and your beautiful child!

      Reply
      • 26/12/2014 at 10:52 AM
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        Beautiful story. My daughter was just diagnosed and I need this kind of support.

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  • 26/10/2012 at 11:30 PM
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    It’s Mary again. If you have an OB/GYN, talk to him or her. I hear there is a lot of support that kicks in when there is a diagnosis of Turner Syndrome.

    Some women with Turner have problems with their heart function. I do not. I’m lucky that way. Like I said, every girl and woman with Turner Syndrome is different.
    Best, Mary B.

    Reply
    • 07/10/2013 at 9:48 AM
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      I am 26 and I have Turner Syndrome. What this site is saying about heart defects isn’t all accurate. I have a bicuspid aortic valve, but no narrowing of the aortic arch. Even the bicuspid valve hasn’t caused me any major problems. Although, I still have an echocardiogram every 2 or 3 years just to make sure everything looks ok.

      Reply
  • 05/04/2013 at 3:33 AM
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    Baby shoes are in great demand, now more than ever. From styles and colors to shapes and design, just about everything is available in the new, booming baby footwear market. It is important however, to choose the shoes that best suit your baby to ensure that your bundle of joy experiences no discomfort or pain at any point of time.*

    Reply
  • 20/05/2013 at 5:20 AM
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    I am 40 years old and have turners. Diagnosed at birth.. for your site to say I only have 10 more years left is stupid and disgraceful.. Read and get your facts straight…girls younger than me read this

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    • 13/10/2015 at 10:17 PM
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      I agree completely. We live a normal life span.

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      • 10/11/2015 at 9:20 AM
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        I am glad I am reading this site, it is helpful and supportive for women with TS. I am 51 and was diagnosed when I was 13, I also thought we had a shorter life span to. And to hear you don’t need to be on hormone therapy for life, cause this will be the first year not taking the hormone therapy. I told my OBGYN doc I would be nervous about not taking them anymore, now I won’t be quiet to nervous.

        Reply
        • 14/01/2016 at 3:39 AM
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          I am currently 55 years old. Diagnosed with Mosaic Turner’s Syndrome in my early 20’s. No children, menopause at 24 years old. I have aortic valve stenosis as well as mitral valve stenosis, but have been under cardiologist care most of my adult life. (And thus far – no cardiac surgeries!) I also had minor learning disabilities – especially in math. I took estrogen replacement therapy from my 20’s through 40’s. Then began the Actonel, Boniva, Fosamax, Forteo, and currently the bi-annual Prolia injections in an attempt to prevent the worsening of my Osteoporosis. Other than medication regimes, I feel like the average woman. I have had a good life, had fun, traveled, participated in light sports, married a very kind, understanding man, held an average paying job, and plan on having another good 20 years of life! Most of my friends (other than my closest friends) don’t know that I am any different than they are. I do not feel sick, nor do I suffer from pain. There are some emotional scars over not bearing children; however, when I see that the majority of earth’s inhabitants have it so far worse than me, I do not dwell on what I don’t have or couldn’t have, but certainly embrace the positives of my life. It is very possible to live a long, happy life with MTS. My hope is that anyone recently diagnosed with MTS or TS, will read this message and that it relieves some anxieties for what the future holds for we MTS and TS babies.

          Reply
  • 08/10/2013 at 4:17 AM
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    Is it possible for women with turners to have a lower libido since their ovaries aren’t functioing?

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  • 17/10/2013 at 5:18 AM
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    I feel a little beauty therapy made my daughter (who has TS) and I feel much better in about two seconds. We went and got our hair and nails done. Now every month we leave the boys at home and go get beautiful which makes everyone at home a little more relaxed. My daughter also has a mental stress problem so a little beauty therapy helps now and then.

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  • 04/06/2014 at 5:10 PM
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    My daughter is 4 months and doctor just told her that her baby may have ts. Can you explain to us about the testing she is about to go thru

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  • 23/06/2014 at 6:19 PM
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    hi everyone my name is megan I have a lil girl with ts her name Is zoey she will be 2 in july… she is very out going she loves to play with kids :) my ? is does ts effect your walking ? she will be 2 and doeent wanna walk yet ? she will walk if I walk with her but she doent wanna go by her self ? so her therapist just got her a gate trainer to use to see if that could help her out… but I was just woundering y she doesn’t wanna go maybe she isent ready or does it come from ts… any help from you would be great thanks :)

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  • 06/09/2014 at 2:25 PM
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    Hi, I have TS and feel really lucky. I have had a normal life and really enjoy my family. For me, I think it is the infertility that is an issue. I had perfect health until I contracted Lyme disease, and even with that, I continue to lead a normal life. No, women with TS are not as tall as others, I just Grab a step stool to grab the high stuff.

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  • 22/09/2014 at 7:00 AM
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    Our daughter was diagnosed at 5 years old. Her only symptom is short stature. She was talking by walking by a year,, and is very smart! I remember reading a site when we first found out and the advice was ‘don’t be scared of growth hormone!’ I needed to read that and now we are almost done with the shots, she’s a very healthy and happy 14 year old, and I completely agree with that! Don’t be scared of growth hormone! It has made the world of difference in our girl’s life. She loves math too! Everyone is different. i pray for all the TS miracles!

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    • 02/10/2014 at 3:35 AM
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      I am very interested in emailing Jaden’s Mom. Our 11 year old granddaughter is being tested for Turner’s and I’m pretty sure she will test positive. I would like to know everything you care to tell me about growth hormone shots.

      Reply
  • 18/10/2014 at 3:31 PM
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    Excellent write-up. I absolutely love this site. Continue the good work!

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  • 22/10/2014 at 2:12 PM
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    My child was born on 05/12/2007 and was dignosed with turner syndrome and when should she start growth hormone enhances bone for growth

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  • 08/12/2014 at 9:07 PM
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    Counseling and family therapy may be helpful for parents with a daughter with TS and individuals with TS during teen years, early adulthood, and beyond. Often we focus on medical treatment, socialization, educational needs and don’t realize that someone with TS may be doing well but may have limited support and some one to talk to when facing issues related to self concept, relationships, intimacy, sexuality, feeling unique. Support groups and interaction with others who have gone through similar experiences can help. Therapists, counselors, and other helping professionals sometimes are not consulted when they could be of great help because parents and even individuals feel they need to be ok and by seeking counseling or support they are somehow not ok. This is a common issue with individuals with many types of disabilities or health related concerns. As a therapist, I encourage anyone who feels that they could use someone who can understand what they are going thru to consider counseling or therapy because it can be a safe place to discuss things you may not be able to easily discuss with friends or family members and can help.

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  • 30/12/2014 at 5:38 AM
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    My stepdaughter is 29 diagnosed with TS at birth. She reached a Height of 5’4″ started hormone therapy at age 12 or 13. She was a gymnast in grade school and high school. Never received a grade below an A. She graduated from college with a 4.0 double major in 3 yrs. She graduated from law school top of her glass and now clerks for 4 federal judges. She has always had high self esteem.
    Not all Ts kids are the same just as no 2 people are the same. She’s doing great. She’s never had a date. That hasn’t stopped her from charging forward.

    Reply
  • Pingback: Infertility In Women With Turner’s Syndrome Pictures | Secret Pregnancy Blog

    • 03/02/2015 at 5:55 PM
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      My wife has TS and I remember when she told me she was so shamed that she couldn’t have children. We weren’t serious then but I took her to an IVF centre as I felt for her and believed this new treatment option could help her. Indeed they advised that using donor egg treatment should work. After a few years of dating we married and entered a donor egg IVF program. When we started this the specialist told us that only 6 births worldwide to TS women had occurred !!. We tried several difference hormone treatment regimes to prepared for the IVF cycle to no avail. I then insisted on a full blood test and the Doctors found that Kerry had low thyroid hormones. It took about 6 moths to stabilize her thyroid levels and then tried again using a frozen embryo … success !! She was pregnant and had our daughter Megan. Next time we repeated the process with an embryo transfer on a Tuesday and by Saturday morning Kerry was ill with morning sickness and subsequently gave birth to our son Stewart. After Stewart was born the IVF Doctors advised that Kerry had the smallest uterus they had ever had a pregnancy in !! Hence women with TS can have children and don’t let people discourage you.

      Reply
  • 23/01/2015 at 7:01 AM
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    Hi I just want to say I was also diagnosed with ts when I was 11-13 yrs old I’m 27 now I’m short look normal my outerlooks just on my wrist is a bit deformity the bone is standing a bit up by my wrist my vagina looks fine its jst my breast very very small I feel un feminine it does affect my relationships it never last as I always think about if I’m goin further I won’t be able to give him a child I wntd to knw tht time @ 11-12yrs I took the hormone tablets to get periods didn’t help I left it now I’m 27 want to knw if I can take it now and hw will I be able to get pregnant and if its safe to have sex life with my condition and can I go on tht hormone therapy again or is there a injection please help

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    • 03/03/2015 at 5:50 PM
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      From my experience the biggest problem my wife experienced was lack of confidence from having TS. If you are not confident in yourself it is reflected in how you come across in your relationships. If you get involved with someone who wants kids but isn’t patient or supportive enough to work with you to have them, then they are probably with the wrong person for you. As regards your body shape and bits – very few of us have perfect bodies and as the years progress less so. If you find someone to love and who loves you TS won’t stand in the way of a good sex and a life together.

      Kerry (my wife) was on artificial hormones since she was teenager and they knocked her around (sunken eyes etc) and gave her really bad PMS. However when she went on the more natural version of these hormones this was less of a problem.

      When you do IVF over long period of time as Kerry & I did you learn a lot. My advice is that when you are ready to have children is to use the natural hormones to create a menstrual cycle and get a full blood test to check if any other hormone levels are out of wack. Apparently TS is often associated with other hormone imbalances such as thyroid In our experience the IVF doctors saw TS but didn’t look any further. We tried several cycles of IVF to no avail and whilst all the parameters looked ok eg womb thickness, E & P hormones levels it wasn’t working. Through a GP friend I insisted upon Kerry having a full blood test and found her thyroid levels were down. Once these were fixed she got pregnant immediately after the next two frozen embryo transfers. Kerry continued having hormone treatment for the first trimester at diminished rates as the baby’s placenta grew and started producing hormones itself. After the first trimester the placenta produces enough hormones itself and was the first time Kerry had not had to take hormone tablets since she was a teenager. She had to have a C-section and our children were bottle fed because she didn’t produce the hormone oxytocin that triggers womb contractions and milk production but we didn’t find it problem. In fact I liked the fact that our kids were bottle fed as I could be involved in feeding them which was great.

      TS does have its challenges but don’t let it stop or limit you.

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  • 06/02/2015 at 10:26 AM
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    My daughter was diagnosed at age 11 and she is 23 now. Super smart, A student, but worked extremely hard to get those A’s which are so important to her. She still struggles socially. It’s hard to find people who are patient and compassionate. She doesn’t really appear to have Turner’s,but was teased a lot in school for being short. She finally reached 5ft. Dating hasn’t happened, although she is very pretty. People sense something “different” about her, but can’t put their finger on it, so they’re just mean. She’s working on a Master’s degree now, and there’s a 40 year old man teasing and harrassing her because she raises her hand to answer questions. I would love for her to have some other young ladies with Turner’s to hang out with. I sent her to Turner’s camp for two years when she was a teenager. BEST thing to ever happen. She made so many friends and they are so much alike. Reading, music, drama—similar interests. I only wish I could have sent her more times than I did. It’s really hard to watch her struggle. Just when you think she’s turned a corner, something happens. She’s really sweet, smart and funny. I pray that she’ll find more people who can appreciate that.

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    • 09/04/2015 at 3:13 AM
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      I have a 15-year-old daughter who has TS. I am very interested in the camp you sent your daughter to. Could you give me more information please? She doesn’t seem to make a lot of friends, which bothers me more than it does her.

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  • 25/02/2015 at 3:30 AM
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    my 10 year old just got diagnosed…heart tests came out fine, small cyst in 1 kidney and ovaries of course underdeveloped…my question is the heart issue…we were told by 3 different doctors that once you check the heart and valves and its normal there would be no reason to check it again…yet i read here that some check every couple of years…anybody really know the answer,,,btw she has mosaic TS..starting hgh this week…thanks

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    • 09/04/2015 at 3:16 AM
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      My daughter is checked every 5 years. She has always had a normal checkup, although if I remember correctly, they can develop a thinning of the aorta at a later time especially if they are on growth hormones. I was told this by a cardiologist although he is an older doctor and there may be new information out there. Did you see a pediatric cardiologist?

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  • 27/02/2015 at 3:03 PM
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    Hi My name is Julie, I am 57 years old & was diagnosed with Turner’s Syndrome when I was 15 years old. Up until then I had displayed no symptoms in regard to Turner’s Syndrome, however, when I was 15 @ had not started menstruating my mother became concerned @ took me a Doctor who then referred me to an endocrinologist: The irony of it is that my mother’s maiden name is turner: I am a registered nurse & have done a lot of travelling: I also have some wonderful friends & family: In fact my mother initially blamed herself because at the time she was pregnant with me she took a morning sickness drug which a few years later was taken off the market as it was deemed the cause of some birth defects: I have not had any children but I do have my nieces & nephews& great niece & nephew who I love dearly: I would love to hear from any other Turner’s Syndrome people out there& share their stories:

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    • 09/04/2015 at 9:28 AM
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      Thank you for your positive post. My story is very similar to yours. I will be 60 this year and was diagnosed with TS at 15 as well. My mother was most certainly saddened by the news but set about encouraging resilience in her youngest daughter. I have been lucky in that my health problems have been few so far and generally not related to TS. Yes I am short, I do have hearing loss and lot’s of Nevi. I am having a great career as a registered nurse and have traveled widely. I do not have children but my many nieces and nephews. great nieces and nephews, god daughters and god sons bring me great joy as well as my good friends. I have lived with TS but have tried not to let it define me in fact I have only ever discussed the fact I have TS with my immediate family. I am hoping to be around for lot more years yet, God willing.

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  • 07/03/2015 at 8:45 PM
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    I have a 33 y/o daughter with TS, diagnosed at birth, who suffered a stroke when she had open heart surgery a month before her sixth birthdays- she had a ventricular septal defect.
    She also had a saggital craniectomy at age three months,
    With spinal fluid leaking in her skull, so a further two skull surgeries, by five months.
    She is a very difficult person, in denial, refuses to take hormones, but an amazingly kind, funny person at the same time.
    She’s a flight attendant, so we’re proud of that.
    Hang in there girls!

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  • 09/04/2015 at 3:33 AM
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    I have a 15-year-old daughter with Turner’s Syndrome. She just reached 5 feet with no growth hormones. She has relatively few issues. She has had issues with ear infections and multiple sets of tubes. The one issue she does have, is lymphedema in one of her feet and two toes on that foot. Has anyone else had this issue and if yes, have you had any successful treatments for it? We have seen a podiatrist and a dermatologist, and they don’t have any answers for us.

    As with the other posts on this site, my daughter is great. She is kind, gentle, witty, smart (and has no problems in math), beautiful, and strives to be her own person. She plays tennis (and is on the tennis team in high school). She plans to go to college and have a career. She seems to have friends at school, but not very many outside of school (in other words, not many invites to do things).

    My advice to others is to be supportive, get the necessary checkups and stay on top of it, if you don’t like the answers you get, keep asking. I have found that this is not a one-size fits all diagnosis. I also tell my children everyone has something, either it is on the inside or the outside but everyone has something. This seems to help all my children especially when they feel they are the only one dealing with something whether it is TS, ADHD, Diabetes, etc. Please do not be afraid of TS. God just has a different plan for you. As my daughter said this morning, “Mom, if 1 in 2,000 girls have TS and most births end up still born (statistically speaking), then I am truly a miracle.” Why yes, yes you are and so is everyone of you!

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  • 09/04/2015 at 4:04 AM
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    I just found out today that my little. Angel inside of me has turners syndrome I’m scared to death.but abortion is not a option I love my baby no matter what I just want it to be happy an healthy in her journey

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    • 17/05/2015 at 10:17 PM
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      We just found out that my daughter is carrying a ts child. She is so scared and anxious, first that the baby will not make it to term second obviously complications.
      She is 13 weeks and has not had any signs on ultrasounds, however the cvs test came back with the list chromosome.

      I would like to give her words if encouragement to relieve her anxiety but don’t know what to say or do

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  • 16/04/2015 at 7:27 PM
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    i have above problem please tell me solution please

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  • 12/06/2015 at 8:40 AM
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    Hi every one as I was reading some things on the Internet got little scared the life living number 50 ? Really . I do have TS and I’m a 31 y old and I do have some of the symptomes but never hade a hart problem or anything else stated . I do have a wider neck and lower neck line . Not every woman or a child with TS is the same . Forgot to mention that I’m happily married and have a child so who ever says that women with TS can’t have baby’s they are wrongs!!!!! I went all the way to full term delivered naturally and felling never better so let that not discourage you and do the research your self . To Greg as the last post I’m so happy to hear that and didn’t know that only 6 births were occurred that’s something we’ll that makes it 8 now

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    • 14/10/2015 at 5:30 PM
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      Interesting that you were able to have a child on your own, sounds remarkable and great to hear. Kerry & I were told that use of donor egg was the only option, preferably from a donor in her 20s as egg quality deteriorate over time. As I previously mentioned we were told when we started IVF treatment (probably 16 yrs ago) that only 6 women with TS had successfully had children but IVF technology has come a long way since then. Kerry’s womb was apparently the smallest (~2 cm) they had a pregnancy in at that time but it worked. The main issues being get the thyroid levels correct and conditioning the womb with E and P hormones. The IVF clinic advised us to tell the children of their origins (donor egg) as early as possible so it doesn’t become a secret that later becomes a barrier. We told Megan when she was probably 2 to 3 yrs old using a book called something like “Sometimes it takes 3 people to make a baby”. I had thought it what gone straight over her head when about 3 months later she & I were driving down to the family beach house when out of the blue she started talking about her origins – how we got an egg from a kind woman, fertilized it with my seed and grew her up in Mummy’s tummy. It was really beautiful and exactly what we had told her. We have never had to discuss it again but it was a beautiful moment and fills me with amazement at what a small child can pick up !

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  • 01/08/2015 at 6:35 AM
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    I have ts and I’m pretty normal

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  • 05/10/2015 at 12:54 AM
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    Hi everyone
    I have a 10 y old niece just diagnosed by TS. I wanted to know if growth hormone and other treatments help her to get more confidence?
    is there any severe effect for artificial hormones?
    she is 131cm in this age, how tall is she among TS patients?
    She has some learning difficulties specially in math.

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  • 10/11/2015 at 9:04 AM
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    Hi, this is very helpful and supportive for women with TS, I was diagnosed with TS at 14 also, I am 51 and this year my OBGYN doc will take me off hormone therapy so I told her I would be nervous about not taking the therapy. Now I might not be quiet so nervous after learning that we don’t need to be on hormone therapy for life, and we do have a normal life expectancy. I thought our life expectancy was shorter to, so i’m glad I found this site and learned a little bit more about TS.

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  • 10/11/2015 at 9:27 AM
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    Hi, this is very helpful and supportive for women with TS, I was diagnosed with TS at 14 also, I am 51 and this year my OBGYN doc will take me off hormone therapy so I told her I would be nervous about not taking the therapy. Now I might not be quiet so nervous after learning that we don’t need to be on hormone therapy for life, and we do have a normal life expectancy. I thought our life expectancy was shorter to, so i’m glad I found this site and learned a little bit more about TS.

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  • 04/02/2016 at 9:54 AM
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    I wish I would have found this site a long time ago. My sistercwas diagnosed with Turner’s around 5 years old. After years of hormone therapy, she reached 4 ft 81/2. She had heart issues, horseshoe kidneys, hearing & hair loss, hypertension, & diabetes, & eye issues. But years of tormenting during her school years definitely affected her self esteem. She struggled with social skills. She loved to sing & had a beautiful voice. She longed to fall in love & to have children. However; that never happened. Sadly, my sister committed suicide 2 weeks ago. I sure wish she could of known about a ts support group. My sister turned 52 this past September, she was a year younger than me. Needless to say, we are heartbroken.

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