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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: 01 March 2021

Personal Experiences of Individuals with Aniridia

Personal Experiences of Individuals with Aniridia

Chapter:
4 Personal Experiences of Individuals with Aniridia
Source:
Aniridia and WAGR Syndrome
Author(s):

Jessica J. Otis

Publisher:
Oxford University Press
DOI:10.1093/oso/9780195389302.003.0008

Editor’s Note: Since not much was known about aniridia for many years some doctors did medical procedures that we now know should not be done on aniridic eyes. Please do not use any specific story here as a guide for your journey, since some of the medical procedures mentioned should not have been done. Furthermore, please make sure to see a doctor with experience and knowledge of anirida. Lastly, please keep in mind, each person’s journey has different medical issues. Not everybody will experience the exact same medical challenges in their journeys. Many people affected by aniridia go through similar experiences. Some deal with bullies differently than others, and some may have difference experiences with employment-related issues. Whatever experiences you have had in your life, these stories will show that you are not alone. Many others have felt and gone through situations similar to ones you have gone through. It is our hope that these stories inspire and help you with any struggles you may have now or in the future. I was born with a case of sporadic aniridia in 1976 in Maui, Hawaii, to my parents, Mike and Pat. I have one brother two years older who has normal vision, but my mom had a miscarriage of a girl with the same aniridia condition. I had a normal childhood, doing everything the majority of kids did, including soccer, Cub Scouts, body surfing, boogie boarding, and bicycling. In my early teens I competed in outriggered canoe racing. This was questioned due to my vision, but my six-man crew placed first in the state championship regatta. This experience inspired me to continue in the area of sports and enjoy them while testing my limits, which was done with cross-country running and track and field in high school. When I graduated from Maui High School in 1994, it was considered a great accomplishment by my parents and many teachers who had doubts about my learning abilities due to the inability to read the work written on the board.

Keywords:   Accomplishments, of aniridia patients, Advocacy, of aniridia patients, Aniridia Foundation International (AFI), Personal experiences, of aniridia patients, Pilocarpine, Struggles, of aniridia patients

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