1. Turner Syndrome Society - Home Learn about this disease, find medical information, order publications, share experiences, see some Category Health Conditions and Diseases turner syndrome...... Announcements. Search for Education Scholarships LOOK WHAT'S COOKING New TurnerSyndrome Guide For Families English Spanish(Espanol). TS Journal. http://www.turner-syndrome-us.org/

TS Conference 2003 August 1 - 3 in Walt Disney World's Contemporary Resort, Orlando, FL. Click here for more information. Announcements Search for Education Scholarships **Kelly Packard** 2003 National Spokesperson TS Journal How to Read a Karyotype Celiac Disease and Turner Syndrome Talking With Your Daughter About Turner Syndrome – Part 2 See all the benefits of membership by joining the TSS today. TSS has locations all over the globe. Check out our worldwide organizations. Or, find a local chapter near you. TURNER SYNDROME SOCIETY 14450 TC Jester, Suite 260, Houston TX 77014 Toll Free 800-365-9944; P: 832-249-9988; F: 832-249-9987 tssus@turner-syndrome-us.org Join Our E-mail list Site by Andera Meets BBB guidelines for giving and AFP Member

2. Turner's Syndrome Society, Texas Providing links and information about Turner's Syndrome. Definition and Synonyms, FAQ, TSS Societies Category Health Conditions and Diseases turner syndrome......Turner's Syndrome Society (Texas). Providing links and information about Turner'sSyndrome. Definition Turner's Syndrome Society (Texas). Providing http://www.onr.com/ts-texas/

3. Turner Syndrome Support Society WHAT IS TS INFORMATION NEWS ASPECTS Our aim is to offer support information to girls adult women with turner syndrome, their families and friends. LINKS CONTACT http://www.tss.org.uk/

WHAT IS TS INFORMATION NEWS ASPEC ... TS Our aim is to offer support information to adult women with Turner Syndrome, their families and friends. LINKS CONTACT

4. Turner Syndrome Society - FAQ 1. What is turner syndrome? turner syndrome is a chromosomal condition thatexclusively affects girls and women. 2. What causes turner syndrome? http://www.turner-syndrome-us.org/resource/faq.html

What is Turner syndrome? Turner syndrome is a chromosomal condition that exclusively affects girls and women. It occurs when one of the two X chromosomes normally found in females is missing or incomplete. The syndrome is named after Dr. Henry Turner, who was among the first to describe its features in the 1930's. What causes Turner syndrome? Turner syndrome is caused by the complete or partial absence of one of the two X chromosomes normally found in women. How is Turner syndrome diagnosed? A blood test, called a karyotype, analyzes the chromosomal composition of the individual. This is the most commonly used blood test to diagnose Turner syndrome. Does any one thing cause Turner syndrome? No. Turner syndrome is not associated with any environmental or any other factors generally associated with genetic problems. Despite many efforts, no real causes have been found to be linked to this condition. It appears to be a random event that can happen to anyone. What are the most common characteristics of Turner syndrome? The most common characteristics of Turner syndrome include short stature and lack of ovarian development. A number of other physical features, such as webbed neck, arms that turn out slightly at the elbow, and a low hairline in the back of the head are sometimes seen in Turner syndrome patients. Individuals with Turner syndrome are also prone to cardiovascular problems, kidney and thyroid problems, skeletal disorders such as scoliosis (curvature of the spine) or dislocated hips, and hearing and ear disturbances.

5. About Turner Syndrome The Turner's Syndrome Society of Canada, a nonprofit charitable organization, was founded in 1981 by an individual with http://www.turnersyndrome.ca/

This site is an information resource for those affected by, or interested in Turner's Syndrome. Good places to start are: "About the Society," or "Got Questions?" The Turner's Syndrome Society of Canada, a non-profit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. The Society is run by individuals with TS and their families, supported by professionals and governed by a Board of Directors. We wish to thank the following corporate sponsors for their very generous financial support towards the updating and revision of our booklet "The X's & O's of Turner's Syndrome": - SHOPPERS DRUG MART - CARA OPERATIONS LIMITED Click www.turnerquebec.qc.ca to go to the french language Turner's Syndrome Site. Click www.turner-syndrome-us.org

6. Tim's Turner Syndrome Page Some information about this disease and links to other sites. http://www.iland.net/~tdluke/trnrs.html

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7. Turner Syndrome Clinical Studies At NIH If you have any medical questions or comments about this site, send email to hantonl@mail.nih.gov If you have any technical questions or comments about this site, send email to jungj@mail.nih.gov http://turners.nichd.nih.gov/

If you have any medical questions or comments about this site, send email to hantonl@mail.nih.gov If you have any technical questions or comments about this site, send email to jungj@mail.nih.gov

8. Turner Syndrome turner syndrome. Who to Contact. Where to Go to Chat with Others http://www.familyvillage.wisc.edu/lib_turn.htm

Turner Syndrome Who to Contact Where to Go to Chat with Others Personal Accounts Learn More About It ... Search AltaVista for "Turner Syndrome" Who to Contact Turner Syndrome Society of the United States 1313 S.E. 5th Street Suite 327 Minneapolis, MN 55414 612-379-3619 (fax) Email: shel@turner-syndrome-us.org Where to Go to Chat with Others Usenet News Group: alt.support.turner-syndrom Personal Accounts Big Things In Little Packages A personal account of growing up with Turner Syndrome. Learn More About It What is Turner's Syndrome Turner's Syndrome FAQ Turner Syndrome in a Life Span Perspective: Research and Clinical Aspects Turner Syndrome information from Ped Base Web Sites Turner's Syndrome Society, Texas, "San Antonio / Austin" Chapter The Turner Syndrome Society of the United States Back to [ S - T Family Village Home Library Coffee Shop ... Information Last Updated May 7, 1999 by familyvillage@waisman.wisc.edu Document Source: http://www.familyvillage.wisc.edu/lib_turn.htm

9. Turner Syndrome A female with turner syndrome (45 X). Note the characteristically broad, "webbed" neck. Stature is reduced, and swelling (edema) is seen in the ankles and wrists. This is monosomy X (Turner's syndrome, with karyotype 45, X). turner syndrome. view 1278 KB version. view 7 KB version http://medgen.genetics.utah.edu/photographs/pages/turner_syndrome.htm

Turner syndrome view 1278 KB version view 7 KB version A female with Turner syndrome (45,X). Note the characteristically broad, "webbed" neck. Stature is reduced, and swelling (edema) is seen in the ankles and wrists. view 67 KB version This is monosomy X (Turner's syndrome, with karyotype 45, X). It is uncommon for fetuses with monosomy X to survive. However, women with Turner's syndrome can live relatively normal lives, though they are unable to bear children. view 39 KB version The "streak ovaries" of Turner's syndrome are shown here. Bilaterally below the fallopian tubes at the top of the photograph are long thin bands of tan ovarian tissue in this 55 year old female. No ova were ever present. view 60 KB version A feature of many chromosomal abnormalities is fetal hydrops (hydrops fetalis) in which the soft tissues are markedly edematous and body cavities filled with effusions. This is particularly true of monosomy X. The fetus shown here died in utero (intrauterine fetal demise) and shows signs of maceration (autolysis) such as the slippage of the skin and the reddened color. view 61 KB version One very characteristic feature of a fetus with monosomy X is the "cystic hygroma" of the neck. This is not a true neoplasm, but represents failure of lymphatics to form and drain properly. It is this structure that eventually forms the "web neck" feature of women with Turner's syndrome. Note the grey coloration from prolonged intrauterine demise.

10. TURNER SYNDROME A definition of turner syndrome, followed by the epidemiology, pathogenesis, clinical features, investiga Category Health Conditions and Diseases turner syndrome...... turner syndrome. DEFINITION 4. Hypothyroidism. replacement therapy. INTERNETLINKS Turner's Syndrome Society of the United States The MAGIC Foundation. http://www.icondata.com/health/pedbase/files/TURNERSY.HTM

Pediatric Database (PEDBASE) Discipline: GEN Last Updated: 5/29/94 TURNER SYNDROME DEFINITION: A chromosomal disorder resulting in a syndrome characterized by specific dysmorphic features (short stature) and organ malforations (gonadal dysgenesis). EPIDEMIOLOGY: incidence: 1:2000-5000 live-born girls age of onset: infant - lymphedema childhood - short stature adolescence - primary or secondary ammenorrhea risk factors: females only advanced paternal age (ioschromosome X cases) mother with mosaic or deletional Turner's PATHOGENESIS: 1. History 1938 - first described by H. H. Turner sexual infantilism, webbed neck, cubitus valgus, short 1959 - chromosomal basis of syndrome recognized by Ford et al. 2. Chromosomal Anomalies 1. 45, XO karyotype 55% of cases 2. 46, XX karyotype 25% of cases, (12-20% of all cases have isochromosome X) with alteration in the structure of one of the x chromosomes i.e., deletion, duplication, isochromosome 3. Mosaics 15% of cases may involve 2-3 separate cell lines 46XY karyotype: 2-5% of total Turner's patients essential to perform a bilateral gonadectomy because of increased risk of gonadoblastoma (a tumor of abdominally located gonads that have Y-containing cells) variable clinical presentation from typical Turners to normal male phenotype a trend towards fewer clinical features with more normal cells severity of clinical features does not correlate with karyotype 3. Pathogenesis

11. HTML REDIRECT A personal account of my growing up with turner syndrome.Category Society Transgendered Intersexed Personal Pages......A turner syndrome Site Big Things In Little Packages A personal accountof my growing up with turner syndrome TS Of Canada. Click http://www.cnwl.igs.net/~poirier/

12. About Turner Syndrome (Canada) The Turner's Syndrome Society of Canada, a nonprofit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. (In French and English.) http://www.TurnerSyndrome.ca/

This site is an information resource for those affected by, or interested in Turner's Syndrome. Good places to start are: "About the Society," or "Got Questions?" The Turner's Syndrome Society of Canada, a non-profit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. The Society is run by individuals with TS and their families, supported by professionals and governed by a Board of Directors. We wish to thank the following corporate sponsors for their very generous financial support towards the updating and revision of our booklet "The X's & O's of Turner's Syndrome": - SHOPPERS DRUG MART - CARA OPERATIONS LIMITED Click www.turnerquebec.qc.ca to go to the french language Turner's Syndrome Site. Click www.turner-syndrome-us.org

13. About Turner Syndrome What is Turner's Syndrome? Turner's Syndrome is a condition that affectsabout one in every 2,500 females. It was first described http://www.turnersyndrome.ca/got_quest.html

What is Turner's Syndrome? Turner's Syndrome is a condition that affects about one in every 2,500 females. It was first described in 1938 by Dr. Henry Turner who observed a set of common physical features in some of his patients. However, it was not until 1960 that a chromosomal abnormality was found. Intellectually, girls with Turner's Syndrome are not at risk for mental retardation, but they may have learning problems, especially in arithmetic. Many also have greater difficulty on tasks requiring spatial skills, like map reading, puzzles, visual organization. Although they are not at increased risk for psychological problems, many do have decreased self-esteem and problems with body image. Children with Turner's Syndrome may also be hyperactive. Identifying Features of the Condition: Short stature (mean height of 4'7") Lack of secondary sexual characteristics and infertility Medical problems such as ear, eye, heart, kidney or thyroid difficulties, sugar diabetes, high blood pressure and keloid healing Secondary features such as low set ears, low hairline, webbed neck, pigmented moles, bending out of the elbows, and puffy hands and feet.

14. Turner Syndrome turner syndrome is one of the rare diseases that affect only girls. Short stature and a webbed neck are the most obvious signs of turner syndrome. http://www.usouthal.edu/genetics/turn.htm

Turner Syndrome Turner Syndrome (TS) is a disorder that may be difficult to diagnose clinically. This syndrome is caused by the complete or partial absence of one of the two X chromosomes normally found in females. The diagnosis is made by doing a specialized chromosome test. Without proof that the person has a abnormal X chromosome, another condition may be present (Noonan sydrome). Another reason for chromosome studies in ALL patients suspected of TS is to search for a Y chromosome. If present, further important preventative steps may be indicated. Early and long term coordinated and multidisciplinary care is very important for TS patients. Specialized teams composed of an endrocrinologist, medical geneticist, pediatrician, educators and others is highly recommended. More... Some Key Features ... Short stature Webbed neck Flat or shield-like chest Widely spaced nipples Immature ovaries Our team suggests ... Consulting a clinical geneticist Specialized long term follow up is essential for anticipatory and preventive health care Additional Information ...

15. Clinical Features Of Turner Syndrome turner syndrome affects approximately 1 out of every 2,500 female live birthsworldwide. Almost all individuals with turner syndrome have short stature. http://turners.nichd.nih.gov/ClinicalText2.html

Clinical Features of Turner Syndrome T urner syndrome affects approximately 1 out of every 2,500 female live births worldwide. It embraces a broad spectrum of features, from major heart defects to minor cosmetic issues. Some individuals with Turner syndrome may have only a few features, while others may have many. Almost all people with Turner syndrome have short stature and loss of ovarian function, but the severity of these problems varies considerably amongst individuals. The links to the left will allow you to navigate through the following text: Appearance I ndividuals with Turner syndrome may have a short neck with a webbed appearance, a low hairline at the back of the neck, and low-set ears. Hands and feet of affected individuals may be swollen or puffy at birth, and often have soft nails that turn upward at the ends when they are older. All these features appear to be due to obstruction of the lymphatic system during fetal development. Another characteristic cosmetic feature is the presence of multiple pigmented nevi, which are colored spots on the skin. Short Stature A lmost all individuals with Turner syndrome have short stature. This is partially due to the loss of action SHOX gene on the X-chromosome. This particular gene is important for long bone growth. The loss of SHOX may also explain some of the skeletal features found in Turner syndrome, such as short fingers and toes, and irregular rotations of the wrist and elbow joints. Linear growth is attenuated in utero, and statural growth lags during childhood and adolescence, resulting in adult heights of 143-145 cm (approximately 4 feet 8 inches). Final adult height in Turner syndrome can be increased by a few inches if growth hormone (GH) treatment is given relatively early in childhood. However, not all individuals with Turner syndrome get a good growth response to GH.

16. Major Aspects Of Growth In Children (MAGIC) An organization providing support and education regarding growth disorders in children and related adult disorders. Includes Growth Hormone Deficiency, Barth Syndrome, Congenital Adrenal Hyperplasia, Precocious Puberty, RussellSilver Syndrome, turner syndrome, Thyroid Disorders Septo Optic Dysplasia, McCune-Albright Syndrome, and Rare Disorder/Hypophosphatasia. http://www.magicfoundation.org/

17. Humatrope Provides information about Humatrope, growth hormone deficiency, and turner syndrome. http://www.humatrope.com

See Important Safety Information and Full Prescribing Information Prescribing Information Other Resources and Links Glossary Ask Lilly ... Privacy Statement This site is intended for use by United States residents only. For more information about growth hormone deficiency, contact your doctor or other healthcare professional.

18. Policy Statement Health Supervision for Children With turner syndrome (RE9543). Later in childhood,turner syndrome may be suspected primarily because of short stature. http://www.aap.org/policy/01149.html

Policy Statement Pediatrics Volume 96, Number 6 December, 1995, p 1166-1173 Health Supervision for Children With Turner Syndrome (RE9543) AMERICAN ACADEMY OF PEDIATRICS Committee on Genetics PHENOTYPE Table 1 ). Turner syndrome, however, is not always accompanied by distinctive features and most often is not diagnosed in infancy. Later in childhood, Turner syndrome may be suspected primarily because of short stature. Other prominent presenting features in teenage years are delayed puberty and delayed menarche, and in adult women, anovulation and infertility. A girl with 45,X Turner syndrome may manifest an X-linked recessive disorder because she has only one X chromosome. When a girl has an X-linked recessive disorder, therefore, the possibility of Turner syndrome caused by 45,X or a structural abnormality of an X chromosome should be considered. Cytogenetics MEDICAL TREATMENT Table 2 ), including the following: 1. Check the child's blood pressure and peripheral pulses during each physical examination. Although idiopathic hypertension is found in Turner syndrome, a careful search for cardiac or renal causes should be made. 2. Specifically check for serous otitis and otitis media on every visit, and, if present, institute aggressive treatment. Evaluate the child's hearing, especially if otitis has been present. Hearing loss, which is common in Turner syndrome, may be conductive or sensorineural.

19. Turner Syndrome, Its Symptoms And Treatments turner syndrome is one of the rare diseases that affect only girls. Short statureand a webbed neck are the most obvious signs of turner syndrome. http://www.turner-syndrome.com/

What's in this site? Symptoms Complications Know what to expect from Turner Syndrome. Interventions Find out what you can do to lead a healthy, quality life. What is Turner Syndrome? Turner Syndrome is one of the rare diseases that affect only women. It is caused by abnormalities in one of the X chromosomes, and has a number of symptoms, including short stature and the presence of a webbed neck. While Turner syndrome symptoms may be apparent at birth, the condition often isn't diagnosed until puberty. The characteristic short stature may be overlooked, and the girl is just presumed to be shorter than average. As with other rare diseases, most people have never heard of Turner Syndrome, so the warning signs are often missed. Why Men Don't Get Turner Syndrome So, out of all the rare diseases, why are men immune to Turner Syndrome? Humans have 23 pairs of chromosomes which contain all of our genetic information. Men are distinguished from women by having one pair of chromosomes consisting of a single "X" and a single "Y" chromosome. Women on the other hand normally have two X chromosomes. Turner Syndrome/ Turner's Syndrome Turner Syndrome is occasionally called "Turner's Syndrome." It is named after the doctor who discovered the disease, H.H. Turner. He first identified the disease in 1938.

20. Turner Syndrome Interventions Estrogen replacement therapy, human growth hormones and nonverbal learning disabilitytherapy (nld) are all possible interventions for turner syndrome. http://www.turner-syndrome.com/html/interventions.php3

What's in this site? Symptoms Complications Know what to expect from Turner Syndrome. Interventions: Find out what you can do to lead a healthy, quality life Interventions for Health and Quality of Life Medical Interventions Medical interventions for Turner Syndrome start early in life. If a diagnosis is made early enough, human growth hormones may be administered from as early as six or seven years of age. The use of human growth hormones may allow the child with Turner Syndrome to attain slightly higher height than the 4 feet 8 inches (143 cm) that is the average adult height of Turner Syndrome adults. This may help with the child's self-esteem as she ages. Many Turner Syndrome teenagers struggle with self-esteem problems. Intervention using human growth hormones has its down side: nobody likes to endure multiple shots over long periods of time. Estrogen Replacement Therapy Mental and Physical Therapy Interventions such as human growth hormones and estrogen replacement therapy aren't just physical interventions. Girls with Turner Syndrome are acutely aware that they are different from their classmates and friends. It's frustrating being the smallest kid in class, and watching all your friends and classmates develop through puberty. Physical therapy can help reduce these feelings and build confidence.

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