Tell me about you

You or a member of your family has been told that you have glaucoma. Or, you have had glaucoma for some time and are concerned that the treatment you’re receiving isn’t right for you. To help you answer the many questions about this common eye disease, I wrote this guide to give authoritative answers, easily understood explanations, helpful suggestions, and life-style advice. It won’t matter if you are not a medical specialist, since the guide is written in plain English. Most glaucoma patients retain good vision and live a normal life. The solutions given here can take the stress out of dealing with glaucoma and should maximize the chance that no further injury to your ability to see will occur.

When someone comes for a glaucoma consultation for the first time, I start by asking: “Tell me about you”. I do this because getting to know each other is the most important aspect of a long-term relationship. This relationship is the one which will help you keep your vision for as long as you need it. If you’ve read this far, you have already taken an important first step in that process. You are showing an interest in knowing more. The purpose of this guide is to provide information that will help us to inform you and provide the facts that you need to deal with this treatable problem.

Believe it or not, on hearing the initial news that they may have glaucoma, many people think things like: “I probably don’t really have glaucoma”; or “The diagnosis was wrong”; or, “I never did anything bad to get it, so it can’t have happened”. When people deny that they really have glaucoma, the sad result is that some of them stop coming for exams and do not follow advice about taking eye drops. Some rely only on “alternative” therapies. Learning about each patient, who they are, what they do, are they a Mom or Dad or a Grandparent, helps doctors to find the best solutions to caring for them as individuals. Some people want detailed scientific explanations and like to see videos of eye surgery. Others need simple solutions and don’t want too much detail. Here, you can get both. If you want the highlights, there are “Take Home” messages at the start of each section with the most important information. For those wishing to know much more in any section, the details follow. If you still want more, online Internet links are given and a full online version of this book can be reached online at http://hopkinsmedicine/wilmer/gce/book.

This guide’s sections are designed to answer the many questions that patients have asked me in 40 years of practice, as well as the questions that they should have asked. For those who know little about their glaucoma, it begins with a simple introduction to the disease. However, those who want in depth information should not be disappointed. Illustrations assist in understanding concepts, parts of the eye, and surgical treatments. There are not perfect or settled answers to every question about glaucoma. Where there is controversy, I present the different sides of the issue to help you and your doctor to make the better choice for you. Since there is no cure for glaucoma, and no means as yet to restore vision once it is lost, the guide presents ways to continue life at a high level, whatever the stage of glaucoma.

Other books have attempted to succeed at these goals, some written by lay persons and others written by doctors with professional writers. I wrote this guide, with help from my colleagues at the Glaucoma Center of Excellence, Wilmer Eye Institute, to stick closely to actual interactions I’ve had working with patients to manage their glaucoma and their lives. Often, patients come with lists of questions or pages printed from Internet sites from which they try to inform themselves. I encourage this knowledge-seeking, because there is good evidence that patients who try to learn more will do better in the long run. But, it is very hard to figure out what to believe, even for medically trained people. I learned this lesson in trying to help a family member with prostate cancer. I’m a University clinician scientist who should be able to evaluate medical questions and determine the best course. Instead, I was humbled by trying to look at the vast literature, the many web sites, and knowing what to believe. The right thing to do was to read the comprehensive Dr. Patrick Walsh’s "Guide to Surviving Prostate Cancer", written by my Johns Hopkins colleague and internationally known leader in the field. We read Pat’s book, then had a consult with Dr. Walsh, and the right course became clear. It is my hope that this guide will fill a similar need for persons with glaucoma.

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