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Cover image of Disorders of Sex Development

Disorders of Sex Development

A Guide for Parents and Physicians

Amy B. Wisniewski, Ph.D., Steven D. Chernausek, M.D., and Bradley P. Kropp, M.D.

Publication Date
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Compassionately written by an experienced team of professionals, this book offers parents and families essential information about the causes, diagnosis, and treatment of disorders of sex development, or DSD.

DSD refers to medical conditions, usually discovered at birth, in which there is disagreement between a person's genetic sex (i.e., chromosomes) and the appearance of the person's external or internal reproductive structures. After their child is diagnosed with DSD, parents need answers to a host of questions, including

• What is DSD, why does it occur, how is it identified, and how is it...

Compassionately written by an experienced team of professionals, this book offers parents and families essential information about the causes, diagnosis, and treatment of disorders of sex development, or DSD.

DSD refers to medical conditions, usually discovered at birth, in which there is disagreement between a person's genetic sex (i.e., chromosomes) and the appearance of the person's external or internal reproductive structures. After their child is diagnosed with DSD, parents need answers to a host of questions, including

• What is DSD, why does it occur, how is it identified, and how is it treated?
• Did we do something to cause our child's DSD?
• Is my baby a boy or a girl?
• Will my child grow up to be normal and healthy?
• Does my child need surgery?

This concise book answers parents' questions in a reassuring and forthright way, giving affected individuals, their families, and their health care providers a current and evidence-based picture of DSD. It offers clear explanations of how newborns with DSD are evaluated, diagnosed, and treated; describes the different kinds of DSD; and pays close attention to both psychosocial and medical aspects of DSD. This guide also includes information about the importance of support groups and education for affected individuals and their families.

In their daily work, the authors treat, support, and educate people with DSD and their families. This resource gives parents and families access to the authors' expertise so they can reach a meaningful understanding of their child's DSD and make informed decisions about their child's health.

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Reviews

This is essential reading for any family that has a child with DSD.

About

Book Details

Publication Date
Status
Available
Trim Size
5.5
x
8.5
Pages
128
ISBN
9781421405025
Illustration Description
10 halftones, 2 line drawings
Table of Contents

Preface
1. An Introduction to DSD
What is DSD?
How are children with DSD identified?
Did I cause my child to have DSD?
Is my child a boy or a girl?
Will my child grow up to be healthy and happy?
2. What Type

Preface
1. An Introduction to DSD
What is DSD?
How are children with DSD identified?
Did I cause my child to have DSD?
Is my child a boy or a girl?
Will my child grow up to be healthy and happy?
2. What Type of DSD Does My Child Have?
What is 46,XX DSD?
What is 46,XY DSD?
What other types of DSD are there?
3. How Will My Newborn Baby Be Evaluated?
How are different types of DSD identified?
What testing is used to establish a diagnosis?
How are these tests done?
What will these tests tell me about my baby's condition?
4. Gender Development in DSD
What is gender?
What is known about long-term gender development in people with DSD?
5. Understanding and Weighing the Treatment Options
What medical treatments are available for infants and children with DSD?
What surgical treatments are available for infants and children with DSD?
What are the pros and cons associated with these treatments?
6. Educating Children about DSD
Is my child healthy?
Why does my child need all these doctors?
Will my child grow up to look like other people?
Will my child grow up to behave like other people?
7. Long-term Health of People with DSD
Is life expectancy different for people with DSD?
Is my child at risk for other medical conditions because of DSD?
How will hormone replacement affect long-term health?
8. Challenges and Special Circumstances
Should I get a second opinion?
What if I want to change doctors?
What if I think my baby was assigned the wrong gender?
What if my child thinks he or she was assigned the wrong gender?
Should my child participate in a research study?
9. Peer Support
What can peer-support groups offer?
How do I find these groups?
How can I start my own peer-support group?
References
Index

Author Bios
Featured Contributor

Amy B. Wisniewski, Ph.D.

Amy B. Wisniewski, Ph.D., is a research psychologist and an associate professor of urology at the University of Oklahoma Health Sciences Center.