I have a bicuspid aortic valve, but no narrowing of the aortic arch. I had a great childhood and teenage life. She graduated from law school top of her glass and now clerks for 4 federal judges. New Reply Follow New Topic. 7. Whatever she does now seems to have it under control but because not approved she has to struggle to pay for them monthly. Try our interactive tool for help finding information, services, experts, financial aid, and more! Although historically, conjugated equine estrogens (CEE) such as Premarin® had been the preferred method of estrogen replacement in Turner… 3. The next doctor we saw noted my poor breast development. There is no known way to prevent Turner’s Syndrome because the exact cause and risk factors are still unknown. she is amazing and clever. They are both the coolest two people I know. I was on hormones for 20 years or more. I had I guess you could say a bf when I was l7. So the one thing they said she wouldn’t be good at ====she is—-math and sciences. I have been lucky in that my health problems have been few so far and generally not related to TS. THIS SITE HELPED ME A LOT I GOT MUCH INFORMATION. I have Turner Mosaic. I’m so desperate for help. 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. She doesn’t seem to make a lot of friends, which bothers me more than it does her. Health Supervision for Children With Turner Syndrome. However, when complications are not detected, patients often die at an early age due to kidney and heart problems. Comment from: D, mcr, 45-54 Female (Patient) Published: March 22. A normal female has 46 chromosomes, including 2 X-chromosomes (44XX). I’ll pray for your family! 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. She is amazing, and in my opinion, perfect. 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. Up until recently, women with Turner’s syndrome did not have access to focused health care, and thus quality of life was reduced in a significant number of women. She was talking by walking by a year,, and is very smart! The hormones are expensive plus she said they are not approved but have been used for several years and work on many women. Do not be afraid. She had heart issues, horseshoe kidneys, hearing & hair loss, hypertension, & diabetes, & eye issues. I can’t even begin to imagine what you’re going through. Although it is a lifelong condition but with careful treatments and monitoring the patient can live a normal life. This condition is called Turner’s mosaicism. Questions sent to GARD may be posted here if the information could be helpful to others. My advise to parents of girls with TS. 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. Hang in there girls! 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. You are not alone GOD is there with you just trust in him and lean not on your own understanding. We want to hear from you. The entire clinic must have been able to hear them. These turn into embryos which are then carried by the woman with Turner’s syndrome. It is very important that females with Turner Syndrome have regular health check-ups because treatment and early preventive care is important and will let them to live a healthy, normal life. Some registries collect contact information while others collect more detailed medical information. We divorced in l989. Our daughters are amazing, intelligent girls, in their 20’s now and we love them more than anything. Everyone loves her and she lives a completely normal life. They can direct you to research, resources, and services. 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 lost my dad to suicide 1 year ago so completely understand what you are going through. The HPO collects information on symptoms that have been described in medical resources. 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. Most of my friends (other than my closest friends) don’t know that I am any different than they are. The condition may also be seen during ultrasounds where an abnormality in the kidneys and heart is detected. I was made fun of as a teenager for being small, but I never let it bother me. Thanks, my ob/gyn explained to me a few things about that. 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. 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 40 years old and have turners. She was a gymnast in grade school and high school. So, what is the point of all this? She was a straight A student and a honor student. 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. Untuk io can be an thrilling approach based mostly *multiplayer game available on House I am 51 and was diagnosed when I was 13, I also thought we had a shorter life span to. My mom sat there and chuckled along with her. great nieces and nephews, god daughters and god sons bring me great joy as well as my good friends. My daughter is 4 months and doctor just told her that her baby may have ts. 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. I accept this missive sounds selfish with “poor me” thrown in for good measure but that is not what I wish to portray. you’re not always going to have answers but that does not mean that there is no reason because u hve not been given a reason yet. 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. Sex hormones are usually given to improve sexual development. She seems to have friends at school, but not very many outside of school (in other words, not many invites to do things). 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. I have a 15-year-old daughter with Turner’s Syndrome. Idk what to do or expect . God had blessed her with a beautiful voice, a gift. To determine the exact genetic problem in an individual female, karyotyping is done. 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 ! See answer, How can I learn more about learning disabilities in women and girls with Turner syndrome? Best, Mary B. I am 26 and I have Turner Syndrome. I am 56 years old. I was wondering is anyone else has had problems and medicines used and what they have been told about their future. It is difficult to make predictions about how the disease will progress for an individual. Not every woman or a child with TS is the same . I feel God still has me here for some reason. God Bless everyone with TS. I never seen myself as different . About 1 in every 2,500 newborn babies have Turner syndrome.1 Yet according to research, monosomy X is present in 1–2% of all conceptions, but about 99% of affected babies are miscarried or stillborn. 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. i have been so upset after seen this. My final height is 4’8″. Again, it was a miracle I survived. Now every month we leave the boys at home and go get beautiful which makes everyone at home a little more relaxed. she will be 2 and doeent wanna walk yet ? After Stewart was born the IVF Doctors advised that Kerry had the smallest uterus they had ever had a pregnancy in !! Not all Ts kids are the same just as no 2 people are the same. Symptoms of the condition are not harmful for the patient, but certain underlying conditions may contribute to mortality in some cases. We were reminiscing last night about how people thought she was so much younger than she actually was. all the symptoms listed. Katy finch 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. There are many issues girls and women with the disorder must face. life expectancy for turner syndrome . But when she has exams she just looses her nerve at last second. 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. Beautiful story. I had no idea of symptoms to look for or what it was. People with the same disease may not have 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. My stepdaughter is 29 diagnosed with TS at birth. As with the other posts on this site, my daughter is great. 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. I can’t say I would tell you to do what I did but as far as I’m can see I haven’t had any problems from not going to the doctor with this. When Turner’s Syndrome is detected before delivery, parents undergo genetic counseling to help them cope with the condition. It upsets me knowing your sister felt the need to take her own life! 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. 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. These difficulties often lead to problems in everyday functions although most adults with Turner’s Syndrome may lead productive lives. It is true, but it is different depending on what was the damage of the chromosome, Baby shoes are in great demand, now more than ever. I have aortic valve stenosis as well as mitral valve stenosis, but have been under cardiologist care most of my adult life. These hormones are usually affected by the change in estrogen levels. But worries all the time. l The person who commented is incorrect, ovaries have everything to do with sex drive. However when she went on the more natural version of these hormones this was less of a problem. I would like to know everything you care to tell me about growth hormone shots. She’s a flight attendant, so we’re proud of that. 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!!!!! 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. A hard topic, but an important one when it comes to Turner Syndrome Like and Subscribe! Life Expectancy. Research helps us better understand diseases and can lead to advances in diagnosis and treatment. 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 was lucky that the teasing was minimal. Echocardiogram, MRI, pelvic exam and ultrasound of the ovaries and kidneys are done to determine these conditions. She is intellegent and witty and oh! Life expectancy reduces by around thirteen years. Cognitive Problems – Individuals do not experience mental retardation, but only learning disabilities or non-verbal learning disorders. I then had an aortic aneurysm in my 40’s. Trying to continue to have hope . Ive plenty of friends . 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. Hormones replacement therapy can help. What this site is saying about heart defects isn’t all accurate. Mary B. I have a Granddaughter that was diagnosed with Turner Syndrome Mosaic. The doctor set her up with a endocrinologist at the university in our state. But not giving up. I have read several articles on the web. I am what they call a Mosaic; some of my cells are normal, some are not. She graduated from college and went on to do another course at SMU in computers. She burst out into a loud, hearty belly laugh and said, “Oh my God! 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. It may be 10 or 20 years before you get your answers as to why. I have been hurt emotionally because of some people’s ignorance. 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. I supervised a mental health clinic. 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. Better than normal. She is and has always been the joy of our lives. To be honest it can be hard sometimes to Live with the condition. Thyroid problems – Individuals with Turner’s Syndrome may also develop hypothyroidism such as Hashimoto’s thyroiditis. We stopped seeing each other as often because his family moved into town. 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. Can you give me general information about mosaic Turner syndrome and about the prognosis of this condition? Genetics play a part in the occurrence of the condition. 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. After a few years of dating we married and entered a donor egg IVF program. Bone fractures may also develop as a result of osteoporosis. Turner's syndrome, also known as gonadal dysgenesis or Turner's mosaicism, is a genetic condition that is without a cure. Meet some adult ladies with Turner’s Syndrome. Women with Turner’s syndrome have a reduced life expectancy, and recent evidence suggests that this is due to an increased risk of aortic dissection and ischemic heart disease. A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Turner syndrome. She has some learning difficulties specially in math. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. 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. T They are more likely to be employed than other adult women. 1986; 40:97–102. i pray for all the TS miracles! From my experience the biggest problem my wife experienced was lack of confidence from having TS. Do you know of an organization? Have you found the Turner Syndrome Society? She doesn’t really appear to have Turner’s,but was teased a lot in school for being short. By hayyim348151034 | 1 post, last post over a year ago. Some conditions only have a missing X chromosome in some cells, but not others. 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. Kidney problems are often corrected through surgery although the kidney problem does not often result in serious conditions. 4. Well I did thanks be to GOD. About two-thirds of the cases have inactivated X chromosome, which is paternal in origin. I asked if this was a problem and they said no. According to SyndromesPedia, those with Turner's syndrome have a typical reduction of life expectancy of 13 years. .it’s all good, I have both. TS children (and adults) are generally well-adjusted and possess a happy disposition. Visit the group’s website or contact them to learn about the services they offer. 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. Excellent write-up. See answer, Could someone with a mild case of Turner syndrome have occasional monthly menses? When I got diagnosed, it was by an endocrinologist. The defect in the sex chromosome often leads to the following manifestations: The occurrence of symptoms is usually different for each female patient. New Reply Follow New Topic. My Turner is weird. 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. I would even go as far to say I was attractive in my younger days. The test involves a blood sample. I will be 60 this year and was diagnosed with TS at 15 as well. She said she was very capable but not tall enough. 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. 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! Turner syndrome is a very rare chromosonal disorder that occurs in one in 2,000 females at birth. 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. hayyim348151034 over a year ago. 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. See how round my hips are?”. As fat as stature she looks like a mini gymnast and plays like one too! Then I was able to start going once a month. This is a common issue with individuals with many types of disabilities or health related concerns. Our 11 year old granddaughter is being tested for Turner’s and I’m pretty sure she will test positive. Kidney problems – Kidney abnormalities include abnormal kidney tubules, a horse-shoe kidney, or a poor renal blood flow. Aside from sexual dysfunction, individuals with Turner’s syndrome have cognitive limitations specifically in memory, mathematical and spatial skills. And accept you for who you are, and for you health, leave it to the Doctors, just go to your appointments, enjoy your life and find support groups around your area if you have questions talk about it. I have been married to a wonderful man for twelve years. No, women with TS are not as tall as others, I just Grab a step stool to grab the high stuff. She is smart funny has a sharp wit and everybody that meets her can’t believe she’s four cause she looks like two. She received the Presidential sholarship at the college she went to. is updated regularly. It happens regardless of race, region, or cultures. Never received a grade below an A. After my third stroke, I became a nursing home resident. Submit a new question, I underwent an IVF cycle and got pregnant but miscarried at 9 weeks. She has flat feet and one leg is shorter than the other, which affects the way she walks. This type accounts for up to 4% of all cases of Turner’s Syndrome. Up to 45% of patients with Turner’s Syndrome have congenital heart problems. Self esteem collects information on symptoms that people with Turner ’ s have. Possess a happy disposition height throughout life a mini gymnast and plays like one too biggest! By going to help you both not due to kidney and heart detected. Not approved she has to struggle to pay for them monthly treatment, life expectancy the. Some information about a TS child niece just diagnosed yesterday and i need this of... 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