Aniridia and WAGR Syndrome A Guide for Patients and Their Families 1st edition by Jill Ann Nerby, Jessca Otis 9780190452827 019045282X

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ISBN 10: 019045282X
ISBN 13: 9780190452827
Author: Jill Ann Nerby, Jessca Otis 

Our hope is to enlighten and encourage those affected by aniridia and WAGR Syndrome by providing patient support and medical information. There is information to inform parents, teachers, doctors, employers, and the public about aniridia and what it is like to live with it. Several renowned doctors contribute medical chapters. Personal experiences from individuals with aniridia and parents with children with aniridia provide encouragement. Contact information for Aniridia Foundation International (AFI) is included. When a child is born without a complete iris, it is usually a symptom of a broader condition. Known as aniridia, this condition can also be a sign other parts of the eye are underdeveloped as well. Moreover, recent research shows that the gene involved can also affect the kidneys, pancreas and forebrain, so aniridia can coincide with a range of symptoms known as WAGR syndrome. Until recently, however, there was very little information available on aniridia and WAGR Syndrome. Even now, not all of the available information is current or correct, so that when a child is diagnosed with aniridia, the parents often find or are given information that is confusing and even frightening. We created this book to help those families see that they are not alone, and there are a lot of answers and a great deal of hope. It contains information about aniridia and WAGR Syndrome for parents, other family members, friends, teachers, doctors, and employers. We have been very fortunate to have several renowned doctors contribute current and comprehensive medical information that will help to provide concrete answers to basic questions and demystify these conditions. The book has many personal stories from individuals and parents that will help to give a more complete picture of what it is like to live with aniridia and WAGR Syndrome and provide encouragement and comfort. It also contains information about where to go for more answers and support, including the Aniridia Foundation International (AFI), http://www.aniridia.net, a non-profit organization created by one of the authors, Jill Nerby. We hope that you will read this book and join us in creating a better future for those with aniridia and WAGR Syndrome.

Aniridia and WAGR Syndrome A Guide for Patients and Their Families 1st Table of contents:

1: Aniridia, WAGR Syndrome, and Associated Conditions
ANIRIDIA AND WAGR SYNDROME
CLINICAL MANIFESTATIONS OF ANIRIDIA
CLASSIFICATION OF ANIRIDIA
Aniridia Type One (85%)
WHAT IS WAGR SYNDROME?

2: Inspirations
ERIC, USA—DON′T LET ANYTHING STOP YOU
MATTHEW, USA—HAVING A VOICE
TRISCHA, USA—REACH FOR YOUR DREAMS
DOUG, USA—ADVOCACY FOR THOSE WITH DISABILITIES

3: Aniridia–Epidemiology and Genetics
EPIDEMIOLOGY OF ANIRIDIA
GENETICS
SYNDROMES ASSOCIATED WITH ANIRIDIA
GILLESPIE SYNDROME
GENETIC AND DEVELOPMENTAL BASIS OF ANIRIDIA
FISH ANALYSIS
GENETIC COUNSELING
RELATED GENETIC COUNSELING ISSUES

4: Personal Experiences of Individuals with Aniridia
ACCOMPLISHMENTS
ADVOCACY
STRUGGLES

5: Glaucoma Problems Associated with Aniridia
WHAT IS GLAUCOMA?
THE PREVALENCE OF GLAUCOMA IN ANIRIDIA
TYPES OF GLAUCOMA IN ANIRIDIA
EXAMINATION OF THE EYE IN ANIRIDIA
MEDICAL TREATMENT OF GLAUCOMA IN ANIRIDIA
SURGICAL TREATMENT OF GLAUCOMA AND ANIRIDIA
THE EXPERIENCE OF SURGERY
LONG-TERM CARE
POSSIBLE FUTURE THERAPIES
CONCLUSIONS
ACKNOWLEDGMENTS

6: Cornea and Lens Problems in Aniridia
CORNEA PROBLEMS
DIAGNOSIS
MANAGEMENT OF CORNEAL PROBLEMS ASSOCIATED WITH ANIRIDIA
ARTIFICIAL CORNEA
LENS PROBLEMS
COMPLICATIONS OF INTRAOCULAR SURGERY IN ANIRIDIA
SUMMARY

7: Low Vision and Aniridia
FUNCTIONAL VISION CHANGES AND ANIRIDIA
SIGHT EVALUATION/TESTING MODIFICATIONS
LOW VISION DEVICE EVALUATION
MULTIDISCIPLINARY TEAM APPROACH
PROFESSIONALS INVOLVED IN LOW-VISION REHABILITATION

8: Psychological Support

9: Parents’ Experiences
KATHY, U.S.A.—LESSONS FROM THE HEART
MARY, U.S.A.—HOW ANIRIDIA CAN AFFECT A FAMILY
T.L., U.S.A.—DIFFICULTIES RAISING A CHILD WITH ANIRIDIA
JAMIE, U.S.A.—HOPE AND ENCOURAGEMENT (CHILD WITH WAGR SYNDROME)
JANELL, U.S.A.—NEVER LOSE HOPE!
DAWN, U.S.A.—EXPLAINING ANIRIDIA TO OTHERS
S.P., LIECHTENSTEIN—DON′T WORRY!
KIRSTEN, DENMARK—AWARENESS
CHRISTY, U.S.A.—CHILD HAVING SURGERIES
STACY, U.S.A.—ALL I EVER NEEDED
MARK AND JENNIFER, U.S.A.—SHE′S PERFECT (CHILD WITH WAGR SYNDROME)
VICTORIA AND CRAIG, NEW ZEALAND—HAVING YOUR CHILD DIAGNOSED WITH ANIRIDIA
CARRIE, U.S.A.—LITTLE BLACK-EYED PEA
SHIPRA, INDIA—DIFFERENT SOCIETY VIEW
CYNTHIA, U.S.A.—THREE GENERATIONS
KAREN, U.S.A.—THE IMPORTANCE OF KNOWLEDGE (CHILD WITH WAGR SYNDROME)
JUDY, U.S.A.—GIVEN TO US FOR A REASON
ADAM AND JENNIFER, U.S.A.—TYLER′S BETTER TOMORROW

10: Parents’ and Families’ Guide
QUESTIONS FROM OTHER PARENTS THAT YOU MIGHT ASK YOUR DOCTOR

11: Teachers’ and School Administrators’ Guide
WHAT IS ANIRIDIA?
HOW CAN YOU HELP THE STUDENT WITH ANIRIDIA FEEL COMFORTABLE IN YOUR CLASSROOM?
WHAT SPECIAL DEVICES WILL THE STUDENT WITH ANIRIDIA USE?
HOW WILL THE CHILD WITH ANIRIDIA WORK WITH PRINTED MATERIALS?
HOW WILL THE STUDENT WITH ANIRIDIA MANAGE IN ACTIVITIES OUTSIDE THE CLASSROOM?
WHAT ADDITIONAL SKILLS, MATERIALS, OR ASSISTANCE DOES THE CHILD WITH A VISUAL IMPAIRMENT RECEIVE FROM A VI TEACHER?
ADDITIONAL ASSISTANCE
RELATED TOPICS OF INTEREST
CLEARING UP SOME COMMON MISCONCEPTIONS ABOUT VISION

12: Jill Nerby and Aniridia Foundation International
AFI′S MEDICAL ADVISORY BOARD
ANIRIDIA FOUNDATION INTERNATIONAL MISSION STATEMENT

13: Other Support Services
LIGHTHOUSE INTERNATIONAL
LIONS INTERNATIONAL
AMERICAN FOUNDATION FOR THE BLIND
FOUNDATION FOR THE JUNIOR BLIND
NATIONAL FEDERATION OF THE BLIND
LIST OF SERVICES AND THEIR WEBSITES

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