I ;personally will support my new student with TS. One great resource I can recommend is Claudette Biet-Aaron’s “Standing Tall With Turner Syndrome”. 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. And you can look our website about proxy list http://proxylistdaily4you.blogspot.com/. It is named after an endocrinologist who first described it, Henry H. Turner. She was the first of her cousins to go to college and she worked while going. Turner’s syndrome is usually diagnosed before birth through amniocentesis. I am 4feet 7 inches have hypothyroidism, hypertension, no ovaries, no period until starting hrp at 23. They parted as friends and still talk. Don’t be scared of growth hormone! I then insisted on a full blood test and the Doctors found that Kerry had low thyroid hormones. The doctor set her up with a endocrinologist at the university in our state. I was wondering if her mother or father carries the gene that causes this disease? New Reply Follow New Topic. I still would never change a thing. She struggled with social skills. I know for sure new technology is on the way, it was impossible before, it is possible now. some sound catastrophic and others sound relatively minor. You are expecting a baby girl with Turner Syndrome. These include: 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. Turner syndrome: four challenges across the lifespan. I am 15. According to SyndromesPedia, those with Turner's syndrome have a typical reduction of life expectancy of 13 years. The one issue she does have, is lymphedema in one of her feet and two toes on that foot. Funnier even when she spoke! I have Turner syndrome and I am a recently retired 65 year old. 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. The life expectancy of people with Turner syndrome is something less than that of the general population. See answer, Could someone with a mild case of Turner syndrome have occasional monthly menses? We want to hear from you. One bust.”. When she went for her physical for starting first grade they told me that she wasn’t normal on the charts for height. They do a lot of work with children and families. I had a stroke in my 30’s or rather about 25 mini strokes when I was 29 weeks pregnant. Dating hasn’t happened, although she is very pretty. She never let up about it. To be honest it can be hard sometimes to Live with the condition. We want to hear from you. After Stewart was born the IVF Doctors advised that Kerry had the smallest uterus they had ever had a pregnancy in !! rodney419153360 over a year ago. It happens regardless of race, region, or cultures. 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. Although, I still have an echocardiogram every 2 or 3 years just to make sure everything looks ok. Would a blood test from her father indicate if it came from his side of the family? Support groups and interaction with others who have gone through similar experiences can help. Get in touch with the Turner’s Syndrome Society of America. Home » Turner’s Syndrome – Pictures, Symptoms, Causes, Treatment, Life Expectancy. 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 get ocd and bet I have cried over this site many times ..so good to hear from healthy happy ts women ..and syndromes Pedia and all these other sites need to update..hurts me, 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…. I know she is on a regime of some kind of medication for TS. Up to 45% of patients with Turner’s Syndrome have congenital heart problems. During conception, the sex chromosomes are not transferred properly leading to the condition. It also says we die 15 years early. Inclusion on this list is not an endorsement by GARD. Thankfully I have an amazing family unit and friends. Crossref Medline Google Scholar; 6 Gravholt CH, Juul S, Naeraa RW, Hansen J. Morbidity in Turner syndrome. FDA-approved indication: For the treatment of growth failure associated with Turner syndrome. She burst out into a loud, hearty belly laugh and said, “Oh my God! (HPO) . Diabetes, high blood pressure, Addison disease, Cpap, and high chloresterol. Will live a normal life, but lots of doctors appointments and initially facing those other kids who do not understand. I was on hormones for 20 years or more. Like I said, every girl and woman with Turner Syndrome is different. Genetic counseling should be done with parents with an offspring with Turner’s Syndrome, although recurrences with following pregnancies are usually low. After years of hormone therapy, she reached 4 ft 81/2. She graduated in accounting and business. I agree completely. The average age is 69-70 years with half of the patients dying from cardiovascular problems while 25 percent die from malignant issues. However, certain supportive treatments can be done to correct the symptoms. I was diagnosed with Turner syndrome at age 4. My dad teased me about that, too. It can help clear up some of the misconceptions about TS. This results in osteoporosis and eventually scoliosis because of the exacerbation of the curvature of the spine. I Truely Believe “There is a Reason for Everything” 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 . This site has been created to provide information and support for a pre-term diagnosis of Turner Syndrome. I send my thoughts and love to you and your family.xx. Enlargement of the distal femoral epiphysis, a low or indistinct hairline in the back of the head, swelling (lymphedema) of the hands and feet. My sistercwas diagnosed with Turner’s around 5 years old. Beautiful story. Kidney problems are often corrected through surgery although the kidney problem does not often result in serious conditions. I have a 15-year-old daughter with Turner’s Syndrome. Sex hormones are usually given to improve sexual development. A special type of Turner’s syndrome, which is Ring-X Turner’s Syndrome, may lead to mental retardation. Well I did thanks be to GOD. Females with this Syndrome can reach as old as 50 years of age. Even doctors, no less, made wise-ass cracks at me. She’s really sweet, smart and funny. The next doctor we saw noted my poor breast development. I am not 45xo. The condition may also be seen during ultrasounds where an abnormality in the kidneys and heart is detected. She was pregnant and had our daughter Megan. Mine is typically easier to cover up, but *nobody* – husband included – knows how much I struggle. Yes I am short, I do have hearing loss and lot’s of Nevi. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. Hi, I have TS and feel really lucky. Comment from: D, mcr, 45-54 Female (Patient) Published: March 22. Idk what to do or expect . 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. Obstructive lesions in the left side of the heart are commonly seen which significantly reduce the blood flow in the heart. My story is very similar to yours. 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. But years of tormenting during her school years definitely affected her self esteem. I retired after my second stroke. I believe there is a lot more they can do now but all those years ago there wasn't. See answer, I have Turner syndrome, and have been getting my period regularly. If you have any worries or questions, please email me. I’m 38 years I was diganoised with ts when I was born. Has anyone else had this issue and if yes, have you had any successful treatments for it? 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. The whole time the doctors told my parents I wouldn’t live to be two weeks old. In fact I liked the fact that our kids were bottle fed as I could be involved in feeding them which was great. I accept this missive sounds selfish with “poor me” thrown in for good measure but that is not what I wish to portray. Needless to say, we are heartbroken. I know work full time as a nurse and studied at university, I drive so my life is no different to anyone else’s. She is 14, lives in NJ, and was diagnosed two years ago. 2. Indeed they advised that using donor egg treatment should work. We live a normal life span. Excellent write-up. My A1c is 12. Thanks, my ob/gyn explained to me a few things about that. Kidney problems – Kidney abnormalities include abnormal kidney tubules, a horse-shoe kidney, or a poor renal blood flow. A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Turner syndrome. I am a 45 year old ts woman . 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. She is determined and does her best to please those she loves. You understand do you some people are mean. Does this mean that my hormones are at a normal level right now? I have made the most out of the gifts god gave me. What i do not understood is actually how you are not actually much more neatly-liked than you might be now. Go out with your friends, and as for guys they will come and go but one of them will say yes to you. She was having loss of hair, heart palpitations and some other symptoms and they said her level was so low it was dangerous. Life expectancy is slightly reduced, but it can be improved with regular health checks to identify and treat potential problems at an early stage. Well I did thanks be to GOD. Since the gonads develop in the same germ layer as other organs, Turner’s syndrome is often accompanied by heart and kidney problems. 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 . I sure wish she could of known about a ts support group. Then finally when I hit my teenage years I was only going every three months. I adore this little one. So, what is the point of all this? She hasn’t had a lot of health issues but of course she is not one to discuss problems with health. Hi,I log on to your blog named “Turner’s Syndrome Pictures, Symptoms, Treatment, Life Expectancy” like every week.Your writing style is witty, keep doing what you’re doing! I am very interested in emailing Jaden’s Mom. See answer, My stepdaughter has Turner syndrome. The sex chromosomes indicate the sex of the person. I was Teased just as mercilessly at home as I ever was at school. They exhibit a resiliency that is rarely seen. I am begging to feel like myself. The long-term outlook (prognosis) for people with Turner syndrome is typically good. Everyone loves her and she lives a completely normal life. 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: Thank you for your positive post. R A hard topic, but an important one when it comes to Turner Syndrome Like and Subscribe! My Turner syndrome was diagnosed at the age of 8 back in 1979. She cancelled her dietition because she too busy. You are blessed with this child…she will be wonderful. Ive plenty of friends . Untuk io can be an thrilling approach based mostly *multiplayer game available on House 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. Hi everyone I found out I had Turner’s at 40. oh my gosh! Individuals with Turner’s Syndrome who do not receive estrogen therapy are likely to develop osteoporosis. 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. The entire clinic must have been able to hear them. I have had had several serious heart problems but not until I was in my late 30’s. Your loved one can achieve whatever she wants. She said she was very capable but not tall enough. Beautiful story. The HPO collects information on symptoms that have been described in medical resources. It’s hard to find people who are patient and compassionate. Turner Syndrome – Life expectancy Women living with Turner syndrome live up to fifty years. She’s never had a date. Contact a GARD Information Specialist. People with Turner syndrome can lead healthy lives. I had a great childhood and teenage life. God bless you, Myka. I ask and she tries to explain. Scoliosis and Bone Fractures – The normal skeletal development is affected due to inadequate synthesis of estrogen. Other complications include obesity, high blood pressure, cataracts and arthritis. 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. My Turner is weird. I’m a 52-year-old woman who was diagnosed with Turner when I was 15. My daughter is checked every 5 years. Did you see a pediatric cardiologist? My daughter was just diagnosed and I need this kind of support. Some women with Turner have problems with their heart function. 6. However, girls and women with Turner syndrome are … 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 I got diagnosed, it was by an endocrinologist. Over the last few months, this lady and I have been out on several dates and there were/are times I found aspects of her behaviour extremely hard to understand. Use the HPO ID to access more in-depth information about a symptom. She is intellegent and witty and oh! 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. 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