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Aniridia and WAGR SyndromeA Guide for Patients and Their Families$
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Jill Ann Nerby and Jessca Otis

Print publication date: 2010

Print ISBN-13: 9780195389302

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780195389302.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 22 October 2021

Parents’ and Families’ Guide

Parents’ and Families’ Guide

Chapter:
(p.142) 10 Parents’ and Families’ Guide
Source:
Aniridia and WAGR Syndrome
Author(s):

Jessica J. Otis

James D. Lauderdale

Publisher:
Oxford University Press
DOI:10.1093/oso/9780195389302.003.0014

When your child is first diagnosed with aniridia or WAGR syndrome, you will have several questions for your child’s ophthalmologist. To be prepared for the first appointment, the best thing to do is make a list of questions. Some questions other parents have had are listed at the end of this chapter. If you choose to, you can use these as a starting point and add more questions to the list as you think of them. At the appointment, be sure to have your list of questions to ask the doctor. Be sure to repeat what the doctor has told you to make sure you understand him or her. If you’re not sure, then ask the doctor to try to explain it in a different way so you can understand. It is your child, and you should be as informed as possible, and the only way to do that is to ask questions and to have a good relationship with your child’s ophthalmologist. Other questions parents have had that you do not necessarily need to ask an ophthalmologist will be discussed in this chapter. When a child is first diagnosed, a question asked by many parents, especially mothers, is, “Was this my fault?” No, it was not. Do not ever blame yourself for your child having aniridia or WAGR syndrome. It is a genetic disorder that you could not have done anything about, unless you do have it yourself. There is no reason for you to feel guilty or to put blame on yourself for something you had no control over. One way to help get over any of these feelings is to join Aniridia Foundation International, where you can meet many other parents and people with aniridia. From meeting and speaking with them, you can get the support you need. . On AFI’s members’ area website, I asked parents, “What questions did you have when your child was diagnosed?” One mother responded, “Mainly I wish someone had told us that he would be able to see at least a little bit and that the disastrous picture that was painted for us at the start was not actually representative of what he would turn out to be.”

Keywords:   Aniridia Foundation International (AFI), Flash and sweep tests, Individual Education Plan (IEP), PAX6 gene, Parents’ and families’ guide, Preimplantation genetic diagnosis (PGD), VEP test

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