J Epidemiol Community Health. These resources can help families navigate various aspects of living with a rare disease. I was on hormones for 20 years or more. Does anyone have stories about their sons having TS? She graduated from law school top of her glass and now clerks for 4 federal judges. 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. See answer, My daughter was diagnosed with Turner syndrome at the age of 21. 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. 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. Kerry continued having hormone treatment for the first trimester at diminished rates as the baby’s placenta grew and started producing hormones itself. 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!! Our 11 year old granddaughter is being tested for Turner’s and I’m pretty sure she will test positive. I have had 3 strokes, at age 13, age 48, and age 50. God Bless everyone with TS. Untuk io can be an thrilling approach based mostly *multiplayer game available on House I am a liscenced clinical social worker. That instructor also tried to take her partner in the swing show from her because he was so much taller than her. 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. This condition affects approximately 1 in 2,000 females. Echocardiogram, MRI, pelvic exam and ultrasound of the ovaries and kidneys are done to determine these conditions. My advise to parents of girls with TS. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. I was born with a different birth defect. (HPO). I did not have any of the heart problems that can occur. About two-thirds of the cases have inactivated X chromosome, which is paternal in origin. Do you know of a review article? I encourage you to live your life a it is a blessing from GOD. Since the condition is associated with chromosomal aberrations, there is no current cure to completely eradicate the condition. The main issues being get the thyroid levels correct and conditioning the womb with E and P hormones. It is a genetic disorder that usually affects the sexual development of females. 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. Keep in mind I was lucky and there are variations in Turners ? I was lucky that the teasing was minimal. Beautiful story. 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. If you have any worries or questions, please email me. (My mom always says Patience is a Virtue) I am very interested in emailing Jaden’s Mom. 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. The most common karyotype of individuals with Turner’s Syndrome is 45XO or a non disjunction of the chromosomes. She plans to go to college and have a career. 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. I also had minor learning disabilities – especially in math. The long-term outlook (prognosis) for people with Turner syndrome is typically good. 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. I have no physical abornamalies from having turners syndrome. she is 131cm in this age, how tall is she among TS patients? I adore this little one. (HPO) . My mom sat there and chuckled along with her. According to SyndromesPedia, those with Turner's syndrome have a typical reduction of life expectancy of 13 years. young and stupid and should of went to the school board but didn’t want to cause my daughter anymore hurt feelings. 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. Living with a genetic or rare disease can impact the daily lives of patients and families. She is such a kind, caring and lovable person and there isn’t too many people who didn’t like her. See answer, Could someone with a mild case of Turner syndrome have occasional monthly menses? Diagnosed with Mosaic Turner’s Syndrome in my early 20’s. In fact I liked the fact that our kids were bottle fed as I could be involved in feeding them which was great. 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. Females with Turner’s Syndrome usually reach 50 years of age. http://ghr.nlm.nih.gov/condition/turner-syndrome, http://emedicine.medscape.com/article/949681-overview, http://www.mayoclinic.org/diseases-conditions/turner-syndrome/basics/definition/con-20032572. I took many difficult math courses and succeeded. You are not alone GOD is there with you just trust in him and lean not on your own understanding. 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 had no idea of symptoms to look for or what it was. Like I said, every girl and woman with Turner Syndrome is different. I am 50 and have TS. My message to everyone is to never give up. I send my thoughts and love to you and your family.xx. She is 14, lives in NJ, and was diagnosed two years ago. Did you see a pediatric cardiologist? Health Supervision for Children With Turner Syndrome. The next doctor we saw noted my poor breast development. Research helps us better understand diseases and can lead to advances in diagnosis and treatment. I only wish I could have sent her more times than I did. What can I do as a parent to help me child in school. Do not treat them differently or younger than they are. Physicians also assist the woman with certain reproduction techniques to help her become pregnant such as the use of donor eggs. I do have a wider neck and lower neck line . Enlargement of the distal femoral epiphysis, a low or indistinct hairline in the back of the head, swelling (lymphedema) of the hands and feet. Well I did thanks be to GOD. I got to be so hateful I didn’t even want to be around myself so I was like thats it I’m done. I didn’t understand that there are differences with female sexual drive and male sexual drive. My best friend of 40 years has TS and she is the most wonderful, beautiful person I know. I retired after my second stroke. However when she went on the more natural version of these hormones this was less of a problem. She has always had high self esteem. I feel God still has me here for some reason. Again, it was a miracle I survived. Medical attention is required for life to manage the health problems associated with Turner syndrome. I am hoping to be around for lot more years yet, God willing. Because she feels if she enjoys herself. My story is very similar to yours. However, girls and women with Turner syndrome are … 3. I would like to know everything you care to tell me about growth hormone shots. 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. Turner’s syndrome is usually diagnosed before birth through amniocentesis. My little brother was born just a year and a half after her without any genetic anomolies. Turner syndrome: four challenges across the lifespan. I had HRT and treatment with growth hormone. Symptoms of Turner syndrome. Hi, I have TS and feel really lucky. do not worry about the 50 yr thing…my bf is 64 this year and we are celebrating by going to NYC to PARTY! I was diagnosed with Turner syndrome at age 4. Hello. My stepdaughter is 29 diagnosed with TS at birth. She also had a saggital craniectomy at age three months, I know she is on a regime of some kind of medication for TS. It’s hard to find people who are patient and compassionate. I have been lucky in that my health problems have been few so far and generally not related to TS. I never seen myself as different . I was Do not be afraid. Turner’s syndrome is a lifelong condition. Turner syndrome can cause a variety of medical and developmental problems, including short height, failure of the ovaries to develop and heart defects.Turner syndrome may be diagnosed before birth (prenatally), during infancy or in early childhood. When we started this the specialist told us that only 6 births worldwide to TS women had occurred !!. I have a variant of Turner’s syndrome. she is amazing and clever. Everyone loves her and she lives a completely normal life. Life expectancy is slightly shorter than average but may be improved by addressing and treating associated chronic illnesses, such as obesity and hypertension. Not being able to have children isn’t as hard for me to cope with, If people in your family REALLY love you, they wouldn’t treat you that way, and if A guy really loves you, he wouldn’t leave you like that because of not being able to have children. We want to hear from you. If you do not want your question posted, please let us know. I was wondering is anyone else has had problems and medicines used and what they have been told about their future. This Doesnt mean that u will have answers right away as for why. The whole time the doctors told my parents I wouldn’t live to be two weeks old. She’s doing great. There are 19 essays written by women who have TS. She was having loss of hair, heart palpitations and some other symptoms and they said her level was so low it was dangerous. My wife has TS and I remember when she told me she was so shamed that she couldn’t have children. Turner syndrome is a chromosomal condition that alters development in females. And prepare your kid mentally so it doesn’t take things personally when others see your kid different. p.s. I have never let it hold me back. We were reminiscing last night about how people thought she was so much younger than she actually was. What i do not understood is actually how you are not actually much more neatly-liked than you might be now. I wanted to know if growth hormone and other treatments help her to get more confidence? Get the latest research information from NIH: https://www.nih.gov/coronavirus (link is external). The condition may also be seen during ultrasounds where an abnormality in the kidneys and heart is detected. Meet some adult ladies with Turner’s Syndrome. It is approved by the Food and Drug Administration for the management of Turner’s Syndrome. I am 57 years old and have mosaic Turner syndrome. That’s LIFE …. However, certain supportive treatments can be done to correct the symptoms. I will leave you with a funny story. Do you have updated information on this disease? This means she may have one X-chromosome, two complete X-chromosomes, or one norm… 5 Price WH, Clayton JF, Collyer S, De Mey R, Wilson J. Mortality ratios, life expectancy, and causes of death in patients with Turner's syndrome. Needless to say, we are heartbroken. I want to encourage you that your granddaughter is full of all the promise that life had to hold. Don’t be scared of growth hormone! Thanks, my ob/gyn explained to me a few things about that. The treatment for Turner’s Syndrome relies on improving the growth and sexual functioning of the woman. https://www.facebook.com/pages/Head-Soccer-Cheats-And-Hack/1401095683509651, THANKS. Tanner Stages of Development Chart Proper Estrogen Replacement in Turner Syndrome Adolescents by Nelly Mauras, MD The proper timing, dose and more recently route of estrogen replacement in females with Turner Syndrome have been better characterized. Again tests were done and that is when we found out what symptoms and problems TS has. My daughter was diagnosed at age 11 and she is 23 now. I then received a masters in reading /language arts. When you do IVF over long period of time as Kerry & I did you learn a lot. For most diseases, symptoms will vary from person to person. Diabetes, high blood pressure, Addison disease, Cpap, and high chloresterol. l The person who commented is incorrect, ovaries have everything to do with sex drive. She has many good friends and teaches special education, touching the lives of many with her loving ways. This is a common issue with individuals with many types of disabilities or health related concerns. Idk what to do or expect . Soooo People, if there is no given or obvious reason right at that moment like u may want know that THERE IS A REASON WHY U DONT. is does ts effect your walking ? In some girls with Turner syndrome, this blood vessel becomes wider over time and can burst suddenly (rupture) which may be life-threatening. She is alomst 31 now and a very deep loving person. She longed to fall in love & to have children. I finished school. I started on estrogen and progesterone at 14. It was really beautiful and exactly what we had told her. I have a 15-year-old daughter who has TS. She has some learning difficulties specially in math. Where do you live? Questions sent to GARD may be posted here if the information could be helpful to others. My Mum always made sure she never treated my sister differently and she used numerous flash cards to teach us everything she could. I had been trying to have a baby for 2 years. 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. However there are a few conditions that could be fatal. Life expectancy is slightly shorter than average but … She never let up about it. This article is wrong and will promote fear in women with TS . Know you are Loved by GOD and he has a purpose for you. 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 now know that it was the hormones that were working on me with this one guy I started to like in high school, so at least the hormone replacement can help. The life expectancy of people with Turner syndrome is something less than that of the general population. Under normal circumstances, a child inherits an X-chromosome from her mother and an X-chromosome from her father, resulting in a perfectly matched pair of X chromosomes. Your granddaughter and my sweet girl sound so much alike when she was that age. But worries all the time. Thanks for this I’m 45 with s career and loving life ! These chromosomes contain the genes and DNA responsible for building the body. See answer, How can I learn more about learning disabilities in women and girls with Turner syndrome? I’m a 40 yr old TS lady and even with growth hormones only reached 149 cm. She doesn’t seem to make a lot of friends, which bothers me more than it does her. 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. Females with Turner’s Syndrome usually reach 50 years of age. People with Turner syndrome can lead healthy lives. There are also lifelong medical problems they must also manage. 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. Get in touch with the Turner’s Syndrome Society of America. My husband and I would love to try in vitro or adopt but can’t afford it. I have had had several serious heart problems but not until I was in my late 30’s. 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. 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. When Turner’s Syndrome is detected before delivery, parents undergo genetic counseling to help them cope with the condition. I would love for her to have some other young ladies with Turner’s to hang out with. It was the 70s, so there was no support back then. I would like to give her words if encouragement to relieve her anxiety but don’t know what to say or do. 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 . I hear there is a lot of support that kicks in when there is a diagnosis of Turner Syndrome. 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. I’m 19 years old living with turners syndrome. Alot of these posts are old but its good to read different stories about ts . In the presence of mosaicism, the childs chromosomal makeup is significantly altered, resulting in either a deficiency or alteration that is carried throughout her sex cells. I found out I had Turner’s at 40. I spent the next year recovering and building up the strength to return back to normality. I’m a 52-year-old woman who was diagnosed with Turner when I was 15. The first case of Turner’s syndrome was a 45X karyotype in a 14 year old girl from London. Even the bicuspid valve hasn’t caused me any major problems. I had a great childhood and teenage life. I believe there is a lot more they can do now but all those years ago there wasn't. After Stewart was born the IVF Doctors advised that Kerry had the smallest uterus they had ever had a pregnancy in !! she will walk if I walk with her but she doent wanna go by her self ? I have turners also. I am not 45xo. 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. So the one thing they said she wouldn’t be good at ====she is—-math and sciences. all the symptoms listed. When I got diagnosed, it was by an endocrinologist. 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. Kidney problems are often corrected through surgery although the kidney problem does not often result in serious conditions. Would a blood test from her father indicate if it came from his side of the family? Just call on him and he is there. Thanks. I am 15. Is there any financial assitance that you know of besides loans? I was on estrogen replacement until a couple of years ago. Occasionally, your doctor also may request a cheek scraping (buccal smear) or skin sample. She will fall behind in work.she is watching what she eats to the extent that she looks up wat calories it had. He never did and never would stop chanting at me, “One bust. Turner Syndrome Life expectancy. Never received a grade below an A. My daughter was just diagnosed yesterday and I was so devastated and I really needed this kind of support. God bless you, Myka. Girls and women with Turner syndrome need ongoing medical care from a variety of specialists. With spinal fluid leaking in her skull, so a further two skull surgeries, by five months. I’m going on 42 and feel like we’re running out of time. Also, I was wondering if women with Turner syndrome are able to have a normal sexual life or if it is harder for them to get sexually aroused because of hormone differences. School nurse sent home notes regarding height and so I saw the Pediatrician again to see if any problems and she said no. Her best subjects were math and sciences. I’ve been married for 32 years, have two daughters (through IVF, so probably explains the infertility part) and am a retired account manager. I’m 38 years I was diganoised with ts when I was born. Thankfully I have an amazing family unit and friends. what is the life expectancy for turner syndrome . 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. The HPO The in-depth resources contain medical and scientific language that may be hard to understand. When she started walking at a year people did double takes because she looked like she was 5 months! Genetics play a part in the occurrence of the condition. 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. I am currently 55 years old. But years of tormenting during her school years definitely affected her self esteem. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. My daughter was just diagnosed and I need this kind of support. Antenatal Screening For Syndrome Detection, Turner’s Syndrome – Pictures, Symptoms, Causes, Treatment, Life Expectancy, General Adaptation Syndrome (GAS) - Stages, Phases, Treatment, SyndromesPedia – Medical Syndromes Information Portal, Pierre Robin Syndrome – Symptoms, Causes, Treatment and Complications, agar io free hack,agar.io hack cydia,agar.io hack bot features,agario hack bot download,agario cheats iphone,agar.io hack android apk,agario skins mod mobile,agario hack bot no survey,agar io skins android,agario cheats chrome,agario skins iphone,agar.io, Lymphedema or swelling of the feet and hands, Rudimentary gonads (ovaries) which eventually become fibrosed, Smaller hips or have the same size as the waist (poor hip-to-waist- ratio). I ask and she tries to explain. I am disappointed that you chose not to print my post and shows that, on the whole, you actually lack empathy towards those with very real emotional traumas. I recently had a hysterectomy. I got my diagnosis when I was 14. I had perfect health until I contracted Lyme disease, and even with that, I continue to lead a normal life. 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 can direct you to research, resources, and services. I hope you can find happiness like I have. I had a stroke in my 30’s or rather about 25 mini strokes when I was 29 weeks pregnant. Since the gonads develop in the same germ layer as other organs, Turner’s syndrome is often accompanied by heart and kidney problems. One great resource I can recommend is Claudette Biet-Aaron’s “Standing Tall With Turner Syndrome”. 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. See answer, My stepdaughter has Turner syndrome. 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. She worked for a Credit Union and for GE Capital for over 20 years total. Beautiful story. 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 have had a normal life and really enjoy my family. She was a straight A student and a honor student. I told my OBGYN doc I would be nervous about not taking them anymore, now I won’t be quiet to nervous. Learn about Turner syndrome, an abnormality in the X chromosome of females that leaves them infertile. BEST thing to ever happen. 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. It’s Mary again. We had genetic testing and were told the child had Turner syndrome. I would even go as far to say I was attractive in my younger days. Genetics Education Materials for School Success (GEMSS), Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Human Genome Research Institute's. 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! No, women with TS are not as tall as others, I just Grab a step stool to grab the high stuff. Through a GP friend I insisted upon Kerry having a full blood test and found her thyroid levels were down. I was Teased just as mercilessly at home as I ever was at school. But I have had a fairly normal life. 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 ! We love her so much and she knows we are there for her. To the above poster, non-functioning ovaries will NOT affect sex drive (libido). Blessings to you and yours. This site has been created to provide information and support for a pre-term diagnosis of Turner Syndrome. He met another woman and got her pregnant. She cancelled her dietition because she too busy. Females with this Syndrome can reach as old as 50 years of age. It may be 10 or 20 years before you get your answers as to why. Do any of the members participating on this forum happen to have any knowledge about turner syndrome? 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