Aniridia and WAGR Syndrome: A Guide for Patients and Their Families

Hardcover | March 15, 2010

EditorJill Ann Nerby, Jessca Otis

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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 renowneddoctors 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 andforebrain, 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 withaniridia, 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 haveseveral 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 islike 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.

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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 renowneddoctors contribute medical chapters. Personal ...

Jill Ann Nerby, Aniridia Foundation International Founder and CEO, was born with aniridia and glaucoma. Jill received a B.S. in psychology and biology with a concentration in genetics and pre-med studies. Jessica J. Otis was born with sporadic aniridia and horizontal nystagmus. She is an active volunteer for Aniridia Foundation Intern...

other books by Jill Ann Nerby

Format:HardcoverDimensions:208 pages, 9.25 × 6.13 × 0.98 inPublished:March 15, 2010Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0195389301

ISBN - 13:9780195389302

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Table of Contents

PrefaceAbout the Authors1. Aniridia and Associated Conditions2. Inspirations3. Epidemiology and Genetics4. Experiences from those with Aniridia5. Glaucoma in Aniridia6. Cornea and Lens Problems in Aniridia7. Low Vision and Aniridia8. Pscyhological Support9. Parents' experience10. Parents' Guide11. Teachers' Guide12. Jilly Nerby and Aniridia Foundation International13. Other Services14. Some Mothers Chosen by GodAppendixGlossaryBibliographyIndex