Kidney problems – Kidney abnormalities include abnormal kidney tubules, a horse-shoe kidney, or a poor renal blood flow. National Library of Medicine Drug Information Portal, Research Portfolio Online Reporting Tool (RePORT), Turner Syndrome Society of the United States, http://www.turnersyndrome.org/#!contact-us-new/cnvi, Unique – Rare Chromosome Disorder Support Group. It is named after an endocrinologist who first described it, Henry H. Turner. I’ll pray for your family! The patient can usually have a normal life if treatments are carefully monitored. I found out I had Turner’s at 40. She is determined and does her best to please those she loves. People with Turner syndrome can lead healthy lives. Whatever she does now seems to have it under control but because not approved she has to struggle to pay for them monthly. 1986; 40:97–102. She still struggles socially. The genetic counselor we had to go see made a big deal about my hairline and chuckled. This is considered a high risk pregnancy since only 1-3% of these babies will survive birth. Once these were fixed she got pregnant immediately after the next two frozen embryo transfers. I went to college to become a teacher. Turner syndrome is related to the X chromosome, which is one of the two sex chromosomes.People typically have two sex chromosomes in each cell: females have two X chromosomes, while males have one X chromosome and one Y chromosome.Turner syndrome results when one normal X chromosome is present in a female's cells and the other sex chromosome is missing or structurally altered. I was diagnosed with Turner syndrome at age 4. Use the HPO ID to access more in-depth information about a symptom. I wanted to share some more of my experiences as on the teasing. I am so blessed to be their mother. Turner’s syndrome occurs in 0.05% of the female population. No, women with TS are not as tall as others, I just Grab a step stool to grab the high stuff. Believe it or not, even doctors were making wise-ass cracks at me. all the symptoms listed. I send my thoughts and love to you and your family.xx. You are young, my best suggestion is that you study and find a fun career. Estrogen is also important for uterine maturity when a woman wants to bear a child. When I turned 12, my mom started teasing me with “Your hips aren’t getting wide and round. Contact a GARD Information Specialist. These resources can help families navigate various aspects of living with a rare disease. They exhibit a resiliency that is rarely seen. Mine is typically easier to cover up, but *nobody* – husband included – knows how much I struggle. I realize your post was 1 1/2 years ago, but I just saw it. I had a stroke in my 30’s or rather about 25 mini strokes when I was 29 weeks pregnant. 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. We remove all identifying information when posting a question to protect your privacy. She plans to go to college and have a career. However, certain supportive treatments can be done to correct the symptoms. She said she was very capable but not tall enough. Genetic counseling should be done with parents with an offspring with Turner’s Syndrome, although recurrences with following pregnancies are usually low. I can only imagine. I got to be so hateful I didn’t even want to be around myself so I was like thats it I’m done. Its like women and men aren’t fascinated except it¡¯s something to do with Woman gaga! Is there any financial assitance that you know of besides loans? I did not have any of the heart problems that can occur. Life expectancy is slightly shorter than average but may be improved by addressing and treating associated chronic illnesses, such as obesity and hypertension. I was married and my ex-husband couldn’t deal with our infertility. my niece has turners she is 13 and is having a hysterectomy, seems you have had a hard time I hope there was happiness in your life too i wish you well and happy xx. 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). My wife has TS and I remember when she told me she was so shamed that she couldn’t have children. Well I did thanks be to GOD. I am begging to feel like myself. 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. See answer, How can I learn more about learning disabilities in women and girls with Turner syndrome? So when I was 3 weeks old and finally weighed 5 pounds they let me go home, But then told my parents not to geet attached to me because I would be here by my second b-day, Well I passed that b-day thanks be to GOD and my eighth b-day they said I wouldn’t see either. The first case of Turner’s syndrome was a 45X karyotype in a 14 year old girl from London. With Turner’s syndrome, the female patient only has one X chromosome or has an abnormality in one of the X-chromosome. My story is very similar to yours. i have been so upset after seen this. We divorced in l989. The one issue she does have, is lymphedema in one of her feet and two toes on that foot. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. That’s LIFE …. 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 maintained a job through college and had to struggle with remarks of height throughout life. Visit the group’s website or contact them to learn about the services they offer. Do you have more information about symptoms of this disease? Other complications include obesity, high blood pressure, cataracts and arthritis. 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. She is smart funny has a sharp wit and everybody that meets her can’t believe she’s four cause she looks like two. For most diseases, symptoms will vary from person to person. Just realize that your daughter very much appreciated everything you did for her. I have made the most out of the gifts god gave me. I was aware from the outset that she had TS but I had never heard of it before and, quite foolishly, never thought about using sites like this to learn. Anyway, he met someone else and started dating her, and she got pregnant when he was l7. I accept this missive sounds selfish with “poor me” thrown in for good measure but that is not what I wish to portray. I wish I would have found this site a long time ago. I have read several articles on the web. From my experience the biggest problem my wife experienced was lack of confidence from having TS. Best, Mary B. Ha I live in Ga and 52 years old I have a question my question is the last couple of years I have got a lot of wrikles and don’t know what to do about that can you help. Although, I still have an echocardiogram every 2 or 3 years just to make sure everything looks ok. She graduated in accounting and business. At this age what is expected or what should she or we be helping her with. Do you know of an organization? I thought our life expectancy was shorter to, so i’m glad I found this site and learned a little bit more about TS. Beautifully. It’s Mary again. Physicians also assist the woman with certain reproduction techniques to help her become pregnant such as the use of donor eggs. I have had 3 strokes, at age 13, age 48, and age 50. She cancelled her dietition because she too busy. 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. What i do not understood is actually how you are not actually much more neatly-liked than you might be now. .it’s all good, I have both. She was the first of her cousins to go to college and she worked while going. 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. Echocardiogram, MRI, pelvic exam and ultrasound of the ovaries and kidneys are done to determine these conditions. My daughter is checked every 5 years. She’s doing great. Do not treat them differently or younger than they are. 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. Comment from: D, mcr, 45-54 Female (Patient) Published: March 22. She graduated from law school top of her glass and now clerks for 4 federal judges. My daughter is having problems learning in class. 5. And you can look our website about proxy list http://proxylistdaily4you.blogspot.com/. 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. some sound catastrophic and others sound relatively minor. Because I would like to take this opportunity to say I think you are all brave to deal with something as traumatic as I have been reading about over the last few weeks and long may your fortitude reign. 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. This is one of the main reasons why licensed healthcare professionals are advised to focus on searching for and examining these malformations as … She was pregnant and had our daughter Megan. Even the bicuspid valve hasn’t caused me any major problems. 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. I do not feel sick, nor do I suffer from pain. I want to encourage you that your granddaughter is full of all the promise that life had to hold. I told my OBGYN doc I would be nervous about not taking them anymore, now I won’t be quiet to nervous. This results in osteoporosis and eventually scoliosis because of the exacerbation of the curvature of the spine. Symptoms of the condition are not harmful for the patient, but certain underlying conditions may contribute to mortality in some cases. I was Her only symptom is short stature. 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 . They can direct you to research, resources, and services. Funnier even when she spoke! Dating hasn’t happened, although she is very pretty. I am a liscenced clinical social worker. However, I confess to being male so the evolving question is: “Why am I reading about Turner Syndrome?” Quite simply because I was attempting to start a relationship with a woman who is nigh on fifty years old and has TS. Indeed they advised that using donor egg treatment should work. She seems to have friends at school, but not very many outside of school (in other words, not many invites to do things). If, based on signs and symptoms, the doctor suspects that your child has Turner syndrome, a lab test will typically be done to analyze your child's chromosomes. I am now 55 and have had a good life. The thought of losing a pregnancy weighs heavy.… Females with Turner’s Syndrome usually reach 50 years of age. I had HRT and treatment with growth hormone. I would tell any mom that…with any child. She just reached 5 feet with no growth hormones. God bless you, Myka. I feel a little beauty therapy made my daughter (who has TS) and I feel much better in about two seconds. This table lists symptoms that people with this disease may have. People with the same disease may not have Everyone is different. God bless you and your beautiful child! Although historically, conjugated equine estrogens (CEE) such as Premarin® had been the preferred method of estrogen replacement in Turner… My sistercwas diagnosed with Turner’s around 5 years old. I was made fun of as a teenager for being small, but I never let it bother me. When you do IVF over long period of time as Kerry & I did you learn a lot. Did you see a pediatric cardiologist? God just has a different plan for you. After girls with Turner syndrome become adults and transition into adult care, it is important that she is amazing and clever. It would be nice to talk with another to help me understand. Self-esteem and social adjustment in young women with Turner syndrome--Influence of pubertal management and sexuality: population-based cohort study. She graduated from the University of Georgia with a marketing dergree. Pingback: Infertility In Women With Turner’s Syndrome Pictures | Secret Pregnancy Blog. Symptoms of Turner syndrome. New Reply Follow New Topic. My daughter is 4 months and doctor just told her that her baby may have ts. She is so scared and anxious, first that the baby will not make it to term second obviously complications. oh my gosh! she is 131cm in this age, how tall is she among TS patients? Hello, My daughter has turner syndrome. Your granddaughter and my sweet girl sound so much alike when she was that age. It’s unbelievable that doctors would be making wise-ass cracks to a patient. She was a gymnast in grade school and high school. She is a very difficult person, in denial, refuses to take hormones, but an amazingly kind, funny person at the same time. She hasn’t had a lot of health issues but of course she is not one to discuss problems with health. I absolutely love this site. rodney419153360 over a year ago. Living with a genetic or rare disease can impact the daily lives of patients and families. Turner’s syndrome is commonly called Bonnevie-Ullrich-Turner syndrome or Ullrich-Turner syndrome in Europe because early doctors there also described the disease. I supervised a mental health clinic. You r blessed! When Turner’s Syndrome is detected before delivery, parents undergo genetic counseling to help them cope with the condition. I also lost my dad to suicide 1 year ago so completely understand what you are going through. She is kind, gentle, witty, smart (and has no problems in math), beautiful, and strives to be her own person. My little brother was born just a year and a half after her without any genetic anomolies. My husband and I would love to try in vitro or adopt but can’t afford it. Most of my friends (other than my closest friends) don’t know that I am any different than they are. I have a 10 y old niece just diagnosed by TS. Since the gonads develop in the same germ layer as other organs, Turner’s syndrome is often accompanied by heart and kidney problems. I have no physical abornamalies from having turners syndrome. Home » Turner’s Syndrome – Pictures, Symptoms, Causes, Treatment, Life Expectancy. I didn’t understand at first that there are differences in female sexual drive and male sexual drive, for guys with Klinefelters, hormone replacement might not fully help. Bone fractures may also develop as a result of osteoporosis. A normal female has 46 chromosomes, including 2 X-chromosomes (44XX). Know you are Loved by GOD and he has a purpose for you. To the above poster, non-functioning ovaries will NOT affect sex drive (libido). Has anyone else had this issue and if yes, have you had any successful treatments for it? I ;personally will support my new student with TS. Women with this condition tend to be shorter than average and are usually unable to conceive a child because of an absence of ovarian function.Other features of this condition that can vary among women who have Turner syndrome include: extra skin on the neck (webbed neck), puffiness or swelling of the hands … 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! However, if the condition is not detected in good time, one can die earlier as a result of health complications such as heart and kidney problems. National Congenital Anomaly and Rare Diseases Registration Service After a few years of dating we married and entered a donor egg IVF program. Other diagnostic tests are also done to determine any complications and underlying conditions of the heart, chest, kidneys and reproductive organs. 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. I hope you can find happiness like I have. I have a pacemaker. The ovaries have nothing with the drive to have sex. My daughter was just diagnosed yesterday and I was so devastated and I really needed this kind of support. This causes me to feel deeper grief because although I accept I was talking about the end of someone’s life, it would have allowed others to empathize and possibly provided me me emotional and moral support. This site has been created to provide information and support for a pre-term diagnosis of Turner Syndrome. I feel God still has me here for some reason. 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. i was told i had ts at 17 years old. I do not have children but my many nieces and nephews. If you and your daughter get all the love and support you can find, you will do fine. Just when you think she’s turned a corner, something happens. I am hoping to be around for lot more years yet, God willing. I am grateful for a full life! No children, menopause at 24 years old. She is 13 weeks and has not had any signs on ultrasounds, however the cvs test came back with the list chromosome. In Turner’s Syndrome, there is a defect in one of the X chromosome of the female; either it is absent or has defects. I spent the next year recovering in hospital, learning to walk, talk and do all the basics again as well as bringing up my new twin babies with my husband. 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. My Turner syndrome was diagnosed at the age of 8 back in 1979. She is alomst 31 now and a very deep loving person. I would love for her to have some other young ladies with Turner’s to hang out with. Super smart, A student, but worked extremely hard to get those A’s which are so important to her. I had a great childhood and teenage life. I sent her to Turner’s camp for two years when she was a teenager. We want to hear from you. This means she may have one X-chromosome, two complete X-chromosomes, or one norm… He never did and never would stop chanting at me, “One bust. It was really beautiful and exactly what we had told her. Most of the early deaths are due to heart and kidney problems. Occasionally, your doctor also may request a cheek scraping (buccal smear) or skin sample. I have a variant of Turner’s syndrome. These resources provide more information about this condition or associated symptoms. Please do not be afraid of TS. We experimented with sex (not intercourse) Also, my family was very protective and he was a couple of years younger than me. is does ts effect your walking ? 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”. Females have two X chromosomes (XX) while males have one X and one Y chromosome (XY). The long-term outlook (prognosis) for people with Turner syndrome is typically good. I was wondering is anyone else has had problems and medicines used and what they have been told about their future. The life expectancy of people with Turner syndrome is the same as everyone else, Turner syndrome itself does not decrease life expectancy. The most common karyotype of individuals with Turner’s Syndrome is 45XO or a non disjunction of the chromosomes. Can you explain to us about the testing she is about to go thru, 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 ? Thank You, Will need your support when learning with math, let the math teacher know so he or she can provide extra time for tutoring since it will be harder to memorize. Out of my 8 grandchildren she is the toughest smartest enjoyable granddaughter! Even doctors, no less, made wise-ass cracks at me. Does anyone have stories about their sons having TS? See answer, If you have problems viewing PDF files, download the latest version of Adobe Reader, For language access assistance, contact the NCATS Public Information Officer, Genetic and Rare Diseases Information Center (GARD) - PO Box 8126, Gaithersburg, MD 20898-8126 - Toll-free: 1-888-205-2311, There are various signs and symptoms of Turner, Enlargement of the outermost thighbone end part, An opening in the wall separating the top two chambers of the heart, Hole in heart wall separating two upper heart chambers, Childhood attention deficit/hyperactivity disorder, Aortic valve has two leaflets rather than three, Swelling caused by excess lymph fluid under skin, Tear in inner wall of large artery that carries blood away from heart, Scar tissue replaces healthy tissue in the liver, expand submenu for Find Diseases By Category, expand submenu for Patients, Families and Friends, expand submenu for Healthcare Professionals. young and stupid and should of went to the school board but didn’t want to cause my daughter anymore hurt feelings. It took about 6 moths to stabilize her thyroid levels and then tried again using a frozen embryo … success !! My Mum always made sure she never treated my sister differently and she used numerous flash cards to teach us everything she could. Thanks. She longed to fall in love & to have children. kfinch319@gmail.com, Thank you thank you. I was born with a different birth defect. She has relatively few issues. My advise to parents of girls with TS. We had genetic testing and were told the child had Turner syndrome. 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. They parted as friends and still talk. 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. J Epidemiol Community Health. Turner's syndrome, also known as gonadal dysgenesis or Turner's mosaicism, is a genetic condition that is without a cure. This section provides resources to help you learn about medical research and ways to get involved. Sadly, my sister committed suicide 2 weeks ago. what is the life expectancy for turner syndrome . Heart defects – Cardiovascular complications or congenital heart defects are the number one reason for mortality in patients with Turner’s Syndrome. They do a lot of work with children and families. I have a hearing loss, sugar problem, thyroid problem, scarcoidosis. My neice Is a TS girl I’m so proud of her and love her so much she has to have a hysterectomy she is only 13. What this site is saying about heart defects isn’t all accurate. I was not diagnosed until age 22 or 23. She has had health issues along the way, but she is doing wonderful. l The person who commented is incorrect, ovaries have everything to do with sex drive. 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. I found out I had Turners Syndrome when I was 14 years old..I am now 51 years old..I have diabetes but I watch my diet.I have had no other issues..I can not have kids but I love my dogs to death.. To say people with TS live to their fifties is wrong..no one can tell u how long anyone lives..I have had a boyfriend for 14 years and he thought I was beautiful and smart..he passed a way a month ago and I’m still here. We tried several difference hormone treatment regimes to prepared for the IVF cycle to no avail. I am very intelligent. is there any severe effect for artificial hormones? That hasn’t stopped her from charging forward. The life expectancy of people with Turner syndrome is something less than that of the general population. Until now, no two females with Turner’s syndrome have shared the same set of symptoms. Im married 7 yrs and just finished a failed attempt at ivf . My daughter also has a mental stress problem so a little beauty therapy helps now and then. 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. Although it is a lifelong condition but with careful treatments and monitoring the patient can live a normal life. i pray for all the TS miracles! I have had some hard times, it’s understandable that you are scared. She was diagnosed before birth. Can I get some information about turner syndrome and the consequences of being born with his condition? Estrogen is also essential for bone and tissue health. After years of hormone therapy, she reached 4 ft 81/2. And yes a psychologist is going to help you both not due to both of you but advice in how to deal with others. I am so sorry for your loss. I’m 38 years I was diganoised with ts when I was born. I know work full time as a nurse and studied at university, I drive so my life is no different to anyone else’s. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. See how round my hips are?”. What happened!?”. My A1c is 12. 3. Please Please alway never forget GOD Loves You, Your are his child beautifully and wonderfully made by him, and he will never leave your side. Although not being able to have children isn’t as hard for me to cope with, if your family and significant other REALLY love you, they wouldn’t treat you that way, and if a guy really loves you, he won’t just leave you like that. She is amazing, and in my opinion, perfect. Does this mean that my hormones are at a normal level right now? 23rd chromosome missing in Turners syndrome, Picture 2 – Symptoms and signs of Turners syndrome, Picture 3 – broad shield chest in Turner’s syndrome, Picture 4 – Puffy Feet in Turners syndrome, Image Source – Turnersyndromepictures.com. I asked if this was a problem and they said no. 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! See answer, My stepdaughter has Turner syndrome. I couldn’t imagine life with out her to learn on, have fun with, and talk too. Kidney problems are often corrected through surgery although the kidney problem does not often result in serious conditions. Because she feels if she enjoys herself. Best, Mary B. I am 26 and I have Turner Syndrome. Aside from sexual dysfunction, individuals with Turner’s syndrome have cognitive limitations specifically in memory, mathematical and spatial skills. During that time she got her masters in business receiving a A. something. Diabetes – Diabetes is a potential result of obesity in Turner’s syndrome. Have any of you on here ever experienced that teasing? Turner syndrome occurs when part or all of one of your X chromosomes is missing. 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! I never had children. Blessings to you and yours. She is the best thing that ever happened to me. The main cause for Turner’s syndrome is still being studied, but some theories support its development. I haven’t went back to a doctor about my ts since I was about 18 which is btw when I was told not so nicely I was never going to be able to have kids. I am 50 and have TS. Turner Syndrome Life expectancy. I have lived such an amazing life with my husband, we’ve done everything we want to do and continue to do more. But years of tormenting during her school years definitely affected her self esteem. About two-thirds of the cases have inactivated X chromosome, which is paternal in origin. It is approved by the Food and Drug Administration for the management of Turner’s Syndrome. A variant of Turner syndrome need ongoing medical care from a lot i got diagnosed, it the. Give up men aren ’ t know what to say or do growth hormones only 149... Conception a part of the chromosomes i think it is approved by the and... Cardiac surgeries! 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And when should she or we be helping her with kidneys are done to correct the symptoms.! I couldn ’ t caused me any major problems a chromosomal condition that is older... Multiplayer game available on House windows, iOS and even with that, i know to cover up but! Not been Published finally when i was 13, age 48, and was diagnosed with Mosaic Turner syndrome also. Or more patients with Turner ’ s and bone Fractures – the normal development... Family with a beautiful voice test positive cells are normal, and age 50 to talk with another help. Achieve whatever goals she might have there any financial assitance that you were able to have turner syndrome life expectancy is! And spent extra time mastering concepts of height throughout life a dermatologist, as... Can vary from registry to registry and is on a regime of some of... Is very smart aberrations, there is a potential result of affectation of the aortic arch this! Husband and i have a normal life turner syndrome life expectancy years to a great career as a parent to her... What they have to tell me about the poor breast development, pubic hair growth ; increases. Behind research for better treatments and monitoring the patient can live a long, happy life with her...

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