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Turner Syndrome

Source: www.turnersyndrome.org
Topic: Turner syndrome
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Sort Desciption: This booklet is intended for families who are affected by Turner syndrome* (TS). It contains a great deal of material, some of which will apply to most girls with TS and much of which will apply to some girls. TS is a highly variable condition. ...

Content Inside:
This booklet is intended for families who are affected by Turner syndrome* (TS). It contains a great deal of material, some of which will apply to most girls with TS and much of which will apply to some girls. TS is a highly variable condition. Every girl with TS is unique and no generalization will apply to every girl, no matter how accurate it is for the group. Most girls with TS are healthy and well- adjusted; some face special physical, emotional, social or learning challenges. All will benefit from good medical care, informed emotional support and careful screening for related conditions. We suggest that you read this book cover-to-cover, then make a list of questions and concerns to discuss with your childâ s doctor or health care team. Share it with family members, friends, teachers, counselors and coaches. Together, youâ ll support your daughterâ s healthy growth in every way. Words convey attitudes, so we have chosen to â put the person firstâ throughout this guide. We talk about girls with TS, not TS girls, to emphasize that people are not defined by a medical condition. When we talk about girls with TS, remember that we are generalizing and that every girl is unique. Thank you! * Glossary words are bold and underlined the first time they are used. Sarah is a bright-eyed, alert newborn girl. Her parents and doctor notice right away that her hands and feet are unusually puffy and that she has extra folds of skin at the back and sides of her neck. Her doctor knows that these features are often signs of a condition called Turner syndrome, so she orders a blood test to find out if this is the case. Sarahâ s parents are worried, although the doctor assures them that Sarah is a strong, healthy baby. Emily is 7 years old and has an ear infection. She has just seen a pediatrician for the first time in several years. When the doctor plots her height on a growth chart, he notices that she is shorter than most girls her age. He also observes that her fingernails are narrow and slant upward. He tells Emilyâ s parents that he suspects she may have Turner syndrome and wants to refer her to a pediatric endocrinologist (a doctor who has special training in caring for children with growth and hormone problems). ...

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