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

The info in this book about WAGR is beyond outdated... So a parent who's daughter was diagnosed it was devastating to read... Later to find out that the information is out dated and now incorrect... There's been several research studies since the book was written and I feel it should be updated with the new and correct info.

As soon as our daughter was diagnosed with Aniridia four months ago (at 2 weeks old), my husband and I began researching and looking for resources to help us better understand what challenges we were going to be facing. The Internet was FULL of differing opinions and facts about Aniridia and WAGR and we soon became very frustrated at the lack of conclusive information about it. When I found this book on the Aniridia Foundation Internation site, I bought it immediately, then ordered 2 more shortly after for our families. Aniridia and WAGR Syndrome: A Guide for Patients and Their Families gave us an understandable explanation of the genetics behind Aniridia, the reality of what challenges we could anticipate for our daughter, the names of numerous resources available to us, and practical ways to help our daughter live a happy life, but most importantly it gave us hope that she WILL be able to live a happy life! This book includes numerous personal stories of people living with Aniridia, and while they are very REAL and sometimes heartbreaking because of the injustices that many of them have faced, they gave us hope that our daughter will have countless opportunities that we originally thought impossible! Thank you Jill and Jessica for this book!

My daughter was diagnosed with aniridia about a month ago. I am so glad I found this book, it has been so helpful and informative. Many other books I've found deal with a broad spectrum of visual impairments. It was nice to have one which addresses aniridia specifically. I would recommend to any parent of a child with aniridia.

Interesting and very informative book about Anaridia. I would recommend it for anyone who knows someone with Aniridia and its side effects.

This book is very informative. It also includes stories of actual patients, as well as stories from parents of people with this disease. I would recommend it for anyone with,or who knows a person with a visual impairment or Albinoism, as well as Aniridia/WAGR syndrome.

While we appreciate ALL the reviews / feedback about our book and use it as constructive criticism for future books, we felt we must respond to the 1 star review as it is not factually written. First and foremost, our book has medical chapters written by top physicians experienced in aniridia and their subspecialty, so to say it is not "a good book medically" is not only incorrect but it has been reviewed by medical journals saying it IS a great book medically and socially for both families, medical students and physicians. The reviewer has no medical education or background to make this statement. For the reviewer to recommend "getting a book written by a doctor like Dr. Holland" is funny because Dr. Edward Holland has NOT written a book on aniridia, he actually WROTE one of the chapters in our book AND is one of our organization's Medical Advisors and Board members (Aniridia Foundation International - AFI). Secondly, the people who submitted experiences, some very personal to them, were recognized by their first names so that their privacy and delicate experiences would be protected as many of them requested. As for the cost of the kindle version or the book, that is not chosen by the authors...it is determined by the publisher. It is evident that there was some prior prejudice towards the author/editors or AFI that was not disclosed by this reviewer to make such inaccurate claims.

A kindle version of a book should not be no more than 5 bux and 10 for an awesome book which this does not fall under. The people that gave their stories for this book are not even recognized. I would recommend getting a book written by a doctor like the book by Dr Holland on Aniridia. Sorry but socially it may be a good reality type book, but not medically not.

Das Buch über Aniridie ist eines der wenigen, das sachlich, fachlich und auch mit einigen Hilfestellungen über eine Behinderung berichtet, die nur selten in der Medizin Beachtung findet. Es werden Menschen ohne Irisanlage geboren. Wer weiß das schon? Hier berichten zwei betroffene Autorinnen von vielen medizinischen wie sozialen Aspekten aber auch von ihrem Leben mit der Aniridie. Es wird klar, dass sie Sehende sind, die sich vor zu hoher Lichteinstrahlung schützen müssen, dass sie technische wie medizinische Hilfe benötigen und dass sie ein annähernd normales Leben führen können. Ein Buch, das Betroffenen und deren Angehörigen Hoffnung machen kann und vielleicht die Dunkelziffer über diese wenig bekannte Erscheinung ein bisschen dezimiert. Es ist englisch geschrieben, und es gibt leider noch keine deutsche Übersetzung.

As soon as our daughter was diagnosed with Aniridia four months ago (at 2 weeks old), my husband and I began researching and looking for resources to help us better understand what challenges we were going to be facing. The Internet was FULL of differing opinions and facts about Aniridia and WAGR and we soon became very frustrated at the lack of conclusive information about it. When I found this book on the Aniridia Foundation Internation site, I bought it immediately, then ordered 2 more shortly after for our families. Aniridia and WAGR Syndrome: A Guide for Patients and Their Families gave us an understandable explanation of the genetics behind Aniridia, the reality of what challenges we could anticipate for our daughter, the names of numerous resources available to us, and practical ways to help our daughter live a happy life, but most importantly it gave us hope that she WILL be able to live a happy life! This book includes numerous personal stories of people living with Aniridia, and while they are very REAL and sometimes heartbreaking because of the injustices that many of them have faced, they gave us hope that our daughter will have countless opportunities that we originally thought impossible! Thank you Jill and Jessica for this book!

My daughter was diagnosed with aniridia about a month ago. I am so glad I found this book, it has been so helpful and informative. Many other books I've found deal with a broad spectrum of visual impairments. It was nice to have one which addresses aniridia specifically. I would recommend to any parent of a child with aniridia.

Interesting and very informative book about Anaridia. I would recommend it for anyone who knows someone with Aniridia and its side effects.

This book is very informative. It also includes stories of actual patients, as well as stories from parents of people with this disease. I would recommend it for anyone with,or who knows a person with a visual impairment or Albinoism, as well as Aniridia/WAGR syndrome.

While we appreciate ALL the reviews / feedback about our book and use it as constructive criticism for future books, we felt we must respond to the 1 star review as it is not factually written. First and foremost, our book has medical chapters written by top physicians experienced in aniridia and their subspecialty, so to say it is not "a good book medically" is not only incorrect but it has been reviewed by medical journals saying it IS a great book medically and socially for both families, medical students and physicians. The reviewer has no medical education or background to make this statement. For the reviewer to recommend "getting a book written by a doctor like Dr. Holland" is funny because Dr. Edward Holland has NOT written a book on aniridia, he actually WROTE one of the chapters in our book AND is one of our organization's Medical Advisors and Board members (Aniridia Foundation International - AFI). Secondly, the people who submitted experiences, some very personal to them, were recognized by their first names so that their privacy and delicate experiences would be protected as many of them requested. As for the cost of the kindle version or the book, that is not chosen by the authors...it is determined by the publisher. It is evident that there was some prior prejudice towards the author/editors or AFI that was not disclosed by this reviewer to make such inaccurate claims.

A kindle version of a book should not be no more than 5 bux and 10 for an awesome book which this does not fall under. The people that gave their stories for this book are not even recognized. I would recommend getting a book written by a doctor like the book by Dr Holland on Aniridia. Sorry but socially it may be a good reality type book, but not medically not.