Protect Your Sight: Age-Related Macular Degeneration

2006-03-17T09:06:00.000-08:00

"...everyone who has this disease, (and their families and doctor), would benefit from this book."

click on cover for larger view
6" x 9", 164 pages, Soft Cover, ISBN 0-9769689-0-8, Publication Date: May 2006

$17.95 or read it online below

Title Page
Introduction: Why You and Your Children Should Buy this Book

Chapter One: A Description of Age-Related Macular Degeneration (AMD)? :: page 1
Chapter Two: What Causes AMD? :: page 19
Chapter Three: Important Risk Factors of AMD :: page 28
Chapter Four: Lifestyle, Diet, and Micronutrients to Reduce Your Risk of Severe AMD :: page 36
Chapter Five: Treatments for the Neovascular or Wet Form of AMD :: page 62
Chapter Six: Vision Rehabilitation :: page 91
Chapter Seven: The Future :: page 127
Chapter Eight: What Should You Do Now? How to Keep up on the Latest in AMD :: page 131

Glossary and Index :: page 144
Dedication and thanks

Endorsements

"The field of age-related macular degeneration is exploding with new research and treatments. It is impossible for patients, or even eye doctors, to keep up on the latest findings and treatments. Drs. Folk and Wilkinson are experts in this field and have the exceptional ability to communicate difficult information in a simple, straightforward style. This is a great book on AMD for the patient and eye care provider and I highly recommend it." - Edwin Stone, M.D., Ph.D., Professor of Ophthalmology, Howard Hughes Medical Investigator, University of Iowa

“Even though I’ve had macular degeneration for more than ten years, your book taught me a lot of new information. It’s very easy to read and understand. I liked the glossary because I can look things up and get my questions answered quickly. I thought the video was excellent to actually see what patients like me go through. I think everyone who has this disease, (and their families and doctor), would benefit from this book. Thank you for sending it to me.” -RM, a retired teacher and patient with age-related macular degeneration

"I'm a busy vitreoretinal specialist and see many patients with age-related macular degeneration. This book presented the latest on research, medical and surgical treatment, and low vision. It also explained where the research and treatment was going in the coming five years and how to keep up-to-date with the new findings. I recommend this book to anyone who takes care of patients with AMD. The book will be especially valuable to my patients who can learn what to do to reduce their chance of losing vision and improve their quality of life." -Denise L. Kayser, MD, North Bay Vitreoretinal Consultants

Introduction

2006-03-17T08:53:00.000-08:00

Introduction – Why You and Your Children Should Buy this Book

Let’s say you’ve been diagnosed with age-related macular degeneration. Your eye doctor spent five minutes with you. You would like to have talked to him longer but you know how busy he is. And you were in shock when he told you your vision was probably going to get worse and that your children might get the disease too. Your mind was racing by then and you can’t really remember what he said.

So what do you do next? Where do you go now for more information? To the internet? The net is jammed with advertisements for nutritional supplements and treatments that someone wants to sell you. The treatment of AMD is big business. How can you tell what claims are the truth – backed by real scientific studies – and what claims are just advertising?

How about what you read in the newspaper or hear on television? The media loves news about treatments for this blinding disease and will pretty much print anything anyone tells them about a new or miracle treatment. Journalists are not scientists and can only write what others tell them. Some experts are even paid by drug companies to promote certain treatments.

Maybe you should search the medical and scientific journals? These are better, but the articles are complicated and written for other scientists. Each paper discusses one small aspect of AMD or one new scientific finding. Even if you could understand these scientific papers, it would be hard to see the big picture.

So why is this book any different? It’s different because we have written it for you, the person with age-related macular degeneration, and for people who are at risk of getting AMD. And because we’re experts in this field and we’re not being paid by anyone to recommend anything. We treat patients with age-related macular degeneration almost every day. We perform research that explores the causes of AMD. We attend scientific meetings. We participate in treatment trials. And we promise to tell you the straight scoop. We’ll tell you what scientists and doctors all over the world know about this disease, and, just as importantly, what they don’t know. The first three chapters describe AMD along with the latest science which yields clues to what causes it. You need to understand the disease in order to fight it. The last six chapters tell how you can fight back to save your vision. We will talk about changing your lifestyle, eating the right foods, and taking multivitamins with zinc along with other medications which may reduce the risk of vision loss. We will discuss the latest treatments for the wet form of AMD, including new ones that have not yet been approved but show promise. We will also talk about how to maximize your remaining vision and live as full a life as possible. You can fight back to save your sight. We’ll tell you how.

Dedication and Thanks

2006-03-17T08:52:00.000-08:00

To our families and to those who suffer from age-related macular degeneration.

We thank our colleagues at The University of Iowa: Michael Abramoff, H. Culver Boldt, Terry Braun, John Fingert, Michael Grassi, Thomas Casavant, Karen M. Gehrs, Greg Hageman, Robert Mullins, Stephen R. Russell, Todd Scheetz, Edwin M. Stone and Thomas A. Weingeist. Please visit us at our websites for more information: http://www.c4md.org/
http://www.medrounds.org/amd/

We thank Patricia Duffel and Ramona Weber for their help with the manuscript. Michael L Klein MD, Professor of Ophthalmology and Director, Macular Degeneration Center, Casey Eye Institute, Oregon Health & Science University reviewed the manuscript and made many helpful suggestions.

Title Page

2006-03-17T08:47:00.000-08:00

Protect Your Sight

How to Save your Vision in the Epidemic of Age-Related Macular Degeneration

by

James C. Folk, MD,
Professor of Ophthalmology

and

Mark E. Wilkinson, OD
Associate Professor of Clinical Ophthalmology
The University of Iowa
Department of Ophthalmology & Visual Sciences

Edited by Mary Allen

This eBook is published and distributed by MedRounds Publications,

owned and operated by Free Educational Publications International, Inc.

Order the book: 6" x 9", 164 pages, Soft Cover, Release Date: May 2006, $17.95 + S&H

(We use PayPal but a PayPal account is not needed for purchase. You may pay securely with your credit card by clicking on "If you do not currently have a PayPal account" link. Order Now)

Advice and suggestions given in this book are not meant to replace professional medical care. The reader is advised to consult his or her physician before undertaking any diet or exercise regimen and in order to gain answers about or treatment for any medical problems. The authors and publisher have made every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, because the practice of medicine may change with ongoing research, changes in government regulations, and developments in medicine, the reader is encouraged to read the package insert for each drug for any change in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new or infrequently employed drug.

Glossary and Index 155

2006-03-10T16:12:00.000-08:00

VERITAS: A study just underway. The acronym stands for VERteporfin (Visudyne®) plus two different dose regimens of Intravitreal Triamcinolone Acetonide versus Visudyne® plus intravitreal pegaptanib (Macugen®) in patients with Subfoveal choroidal neovascu-larization secondary to age-related macular degeneration.

Verteporfin: The dye used in Visudyne® treatment. It absorbs light and gives off free radicals which damage new blood vessels in AMD; 65, 79.

Visual acuity: A measure of sharpness of vision as related to the ability to distinguish the details and shapes of objects at a designated distance. Normally used as a measurement of central (macular) vision; 84, 92, 102, 103, 106.

Vision impairment: Any amount of vision loss that affects an individual's ability to perform the task of daily life resulting from damage or disease to the visual system or the result of the visual system not being formed correctly; 102, 105, 113.

Visudyne®: A type of photodynamic treatment that uses verteporfin as the excitable dye and has been proven to reduce vision loss in neovascular AMD compared to no treatment; 64.

Vitamins for AMD; 39, 41, 48, 49, 50.

Weight Loss: And its effect on AMD; 37.

Wet AMD: New blood vessels have grown and are leaking fluid or blood beneath and within the macula; also called neovascular AMD; in distinction to dry AMD; 10.

Zeaxanthin: A carotenoid pigment found in the macula; 43.

Glossary and Index 154

2006-03-10T16:11:00.000-08:00

Selenium: A trace mineral that is important in the function of the anti-oxidant enzyme, glutathione-peroxidase. Selenium is often included in vitamins for the eye but its value is unknown and there is a risk of toxicity if too much is taken; 39, 53, 55.

Smoking; 20, 21, 28, 29, 32, 36, 42, 44, 56.

Statin drugs: A large family of cholesterol-lowering drugs that may reduce the risk of AMD; 50, 57

Sunlight: And its affect on AMD; 30.

Subretinal Surgery Study (SST): A randomized controlled trial which showed no visual benefit of surgery in the wet form of AMD; 88.

Toll-like receptor: Defects in genes that code for this receptor have been found to be associated with AMD. The receptor is important for the functioning of macrophages which are involved in the removal of foreign matter from the body. The receptor also helps to remove the spent outer segments of cone cells so that they can be renewed; 20.

Thermal laser: A procedure wherein a strong laser beam is absorbed by pigment mainly in the RPE and converted to heat causing a destructive burn; 63.

Trans fats: Artificially hydrogenated vegetable oils that are bad for your eyes and heart. They are often found in margarine and other processed foods; 46.

Transpupillary thermal therapy (TTT): A treatment for neovascular AMD that involves slowly heating the abnormal vessels with an infrared laser. TTT has been replaced by more effective treatments; 81.

Triamcinolone acetonide: The generic name for Kenalog®.

Vascular endothelial growth factor (VEGF): A polypeptide that stimulates the growth of choroidal neovascularization in AMD; 69.

Glossary and Index 153

2006-03-10T16:10:00.000-08:00

Randomized Controlled Trial: A study which tests a new treatment. Patients with a disease first enter they study and then are randomized (like flipping a coin) to receive the new treatment or a placebo treatment. The outcomes of the patients who receive the new treatment are then compared to the outcomes of the control patients who are receiving the placebo treatment; 62.

Ranibizumab: The generic name for Lucentis® which is an antibody that inhibits vascular endothelial growth factor and has been shown to be effective for treating the wet form of AMD; 70.

Reactive oxygen species: Molecules that form when oxygen reacts with light energy and which are destructive to cell membranes; 21, 38.

Relative distance magnification: Increasing the size of the image on the retina by bringing the object to be viewed closer to the eyes; 94.

Relative size magnification: Increasing the size of the image on the retina by increasing the size of the object to be viewed. Large print is an example of this; 94.

Retaane®: Brand name of anecortave acetate, a modified steroid that acts to prevent the growth of new blood vessels. It has been shown to reduce vision loss in the neovascular form of AMD; 73.

Retinal Pigment Epithelium (RPE): A layer of cells that lies between the photoreceptors and Bruch’s membrane; 5.

Retinal Pigment Epithelial Detachment (RPED): An elevation of the RPE from Bruch’s membrane seen mainly in AMD; 9.

Retinal specialist: An ophthalmologist who has completed one or two years of a retinal fellowship after an ophthalmology residency.

Rheophoresis: A technique analogous to renal dialysis in which the large proteins and lipids are removed from the serum. Rheophoresis has been touted as a treatment for AMD but there is little evidence that it’s of any benefit; 84.

Scotoma: A blind spot in the vision. In AMD this can be due to atrophy, blood, or damage from neovascularization; 62.

Glossary and Index 152

2006-03-10T16:09:00.000-08:00

Ophthalmologist: A medical doctor (MD or DO) who has graduated from a four-year medical school, then has completed a one-year internship and a three-year ophthalmology residency.

Optometrist: A doctor of optometry (OD) who has attended undergraduate school and then graduated from a four-year optometry school.

Pegaptanib: The generic name for Macugen®.

Photodynamic therapy (PDT): A treatment for wet AMD in which a light laser treatment is used to activate a dye and destroy the abnormal blood vessels. See Visudyne®; 64.
Photophobia: Light sensitivity to an uncomfortable degree; it usually indicates the presence of an ocular disorder or disease.

PIER: An acronym for A Phase IIIb, Multicenter, Randomized, Double-Masked, Sham Injection-Controlled Study of the Efficacy and Safety of Ranibizumab. It compares subjects with wet AMD who receive one of two doses of Lucentis® against those who receive sham injections. The Lucentis® is given once a month for three months and then only once every three months.

Pigment changes: Lines or dots of brown or black pigment in the macula which lie on the top of drusen. Pigment changes have been shown to be a risk factor for the progression to severe AMD; 4, 8, 9.

Placebo or placebo effect: The phenomenon that occurs because patients wish to get better. Many patients will perceive that they are improving even when given a treatment that has no effect. That is why a control group is necessary in clinical trials to compare to the group taking the new treatment; 54.

Radiation: A treatment that can use a variety of high energy particles that is usually used for the treatment of cancer. It has no benefit for the treatment of AMD; 82.

Glossary and Index 151

2006-03-10T16:07:00.000-08:00

Metamorphopsia: Distortion in vision caused by fluid beneath or in the retina typically seen as a straight line looking bent. It is a common first symptom of neovascular AMD; 61.

Microscopic spectacles: High-powered convex lenses that magnify objects that are held close to the eye. The lenses are usually mounted into eyeglasses and prescribed for one eye only.

MIRA-1: The acronym for the Multicenter Investigation of Rheophoresis for AMD. Patients with AMD are randomized so that two-thirds of them receive rheophoresis and one-third receive a sham treatment. Results are expected in early 2006; 84.
Neovacular AMD: See wet AMD.

Novartis: The drug company that makes and sells verteporfin for Visudyne® treatment.
Occult choroidal neovascularization: This type of abnormal blood vessels fills more slowly with fluorescein than classic neovascularization and leaks less. Occult neovascularization often doesn’t have a sharp boundary like classic neovascularization and tends to progress slower.

Obesity: Twenty to thirty percent above ideal body weight; 30, 37.
Omega-3 poly-unsaturated fatty acids: A group of fatty acids that include linolenic acid, DHA, and EPA which are helpful to reduce the risk of heart disease and AMD; 45, 49.

Omega-6 fatty acids: A group of fatty acids including linoleic acid. Although essential for body functions, they promote inflammation, heart disease, and AMD if taken in too high quantities compared to omega-3 fatty acids; 46, 47, 48
Optic Coherence Tomography (OCT): An imaging test using low-intensity laser to create a cross-section view of the retina. The test helps the eye doctor determine whether there is fluid beneath or within the retina; 77.

Optical device: Any system of lenses that enhances vision function.

Glossary and Index 150

2006-03-10T16:02:00.000-08:00

Linoleic acid: One of the essential omega-6 fatty acids. Found in vegetable oils and animal fat. The western diet is thought to contain too much linoleic acid and too high a ratio of linoleic (omega-6) to linoleic (omega-3) fatty acids. AMD patients should reduce consumption of linoleic acid; 46.

Lucentis®: Generic name is ranibizumab. An antibody to vascular endothelial growth factor that has been proven to reduce vision loss and even to increase vision in patients with neovascular AMD; 70.

Lutein: A carotenoid found in high quantities in the macula; 43.

Macugen®: Generic name is pegaptanib. A molecule that inhibits one form of vascular endothelial growth factor. Has been found to reduce vision loss, when compared to no treatment, in patients with the neovascular form of AMD; 69.

Macula: The central part of the retina that allows for detailed vision; 3.

Macular Photocoagulation Study (MPS): A series of randomized controlled trials that proved thermal laser preserved vision in patients with the wet form of AMD; 17.

Macular translocation: A surgery during which the retina is detached and moved to an area of RPE not involved with new blood vessels as a treatment for neovascular AMD. There are two types:

a. Limited macular translocation – the retina is not cut but detached and pushed inferiorly with a gas bubble; 80.
b. Three hundred and sixty degree translocation – the retina is cut at the periphery and the retina is rotated to a new position; 81.

MARINA: The acronym for the Minimally classic/occult trial of the Anti-VEGF antibody Ranibizumab In the treatment of Neovascular AMD. This was the trial in which ranibizumab (Lucentis®) improved the vision at one-year in patients with the wet form of AMD compared to patients who had received sham injections; 71.

Glossary and Index 149

2006-03-10T16:00:00.000-08:00

Genentech: The biotech company that manufactures Avastin® and Lucentis®.

Glaucoma: An eye disease that causes progressive damage to the optic nerve, usually from elevated intraocular pressure. Corticosteroids used as an adjunct treatment in AMD can cause elevations of the intraocular pressure and glaucoma; 68.

H-factor, Factor H: A protein involved in the regulation of inflammation in the body. Abnormalities in this protein have been associated with AMD implying that inflammation is associated with the disease; 20.

Hypertension: High blood pressure; 29, 32.

Internet: How to use wisely; 134.

Kenalog®: The brand name for the corticosteroid, triamcinolone acetonide. The drug can be injected around or into the eye and has been used along with Visudyne® for the treatment of wet AMD; 67.

Laser: An acronym that stands for Light Amplification through Stimulated Emitted Radiation or, in practical terms, a strong beam of light of the same color. The light does not diverge (spread apart) so it can be used for aiming devices or burning tissue; 63, 74, 79, 82.

Legal blindness: A definition developed by the Social Security Administration to determine eligibility for benefits or services in the United States. It is defined as best corrected visual acuity, with contact lenses or spectacles, in the better seeing eye, of 20/200 or less or a visual field restriction of 20 degrees or less, at its widest extent, in the better eye; 118.

Linolenic acid: Actually alpha-linolenic acid (ALA). ALA is found in nuts and some oils and converted to eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) which are essential fatty acids that reduce inflammation and the risk of heart disease and AMD; 47.

Glossary and Index 148

2006-03-10T15:59:00.000-08:00

a. Small drusen – smaller than 63 microns in size; 5.
b. Medium drusen – 63-125 microns in size; 8.
c. Large drusen – larger than 125 microns in size; 5.

Dry AMD: The macula has drusen and atrophy of photoreceptors and RPE but no new blood vessels in distinction to wet or neovascular AMD; 8.

Eicosapentaenoic acid (EPA): One of the omega-3 fatty acids found in fish and thought to reduce inflammation and the risk of heart disease and AMD; 47, 49.

Electric stimulation: A treatment that has been touted for the treatment of AMD but probably has no benefit; 83.

Endophthalmitis: An infection inside the eye that is usually bacterial and very serious; 70.

Epidemiology: The study of which factors affect the presence or absence of a disease; 28.

Eyetech: The company that makes and sells Macugen®.
Factor H; see H Factor.

Fibulin: A family of genes that code for structural proteins found in the eye and elsewhere in the body. A small percentage of patients with AMD have defects in the fibulin genes; 19.

FOCUS: The acronym for RhuFab V2 Ocular Treatment Combining the Use of Visudyne™ to Evaluate Safety. This study showed that Lucentis combined with Visudyne was more effective for the treatment of the wet form of AMD than Visudyne alone; 71.

Fluorescein angiography (FFA): A photographic test commonly used to image the retinal and choroidal blood vessels. A small amount of fluorescein dye is injected into an arm vein. The dye circulates through the bloodstream and flows into the blood vessels of the eye. Special filters are used to stimulate the dye and the images are captured on film or digitally; 14.

Glossary and Index 147

2006-03-10T15:57:00.000-08:00

Complications of AMD Prevention Trial (CAPT): A trial nearing completion. Patients who had drusen in both eyes were randomized to receive light laser treatment in one eye. This was done to stimulate the resorption of the drusen and preserve vision, but results are not yet known; 74, 75.

Cone cells: Specialized receptors in the outer retina that absorb light and convert it into a chemical signal; 3, 6-8.

Contrast sensitivity testing: A test that measures the ability to detect subtle differences in grayness. It is used to assess quality of vision as opposed to standard acuity charts which look at quantity of vision. Contrast sensitivity may be a better test of visual functioning in real-world situations than standard visual acuity charts which are high-contrast black on white; 92, 103.

Control group: A group of patients who are not receiving the treatment being tested in a clinical trial. This group is compared to the treatment group to see if there is a difference in the outcomes.

Corticosteroids: Drugs analogous to cortisol which decrease inflammation; 67-68.
C-Reactive Protein: A protein produced by the liver that can be measured in the blood. Elevated levels indicate inflammation in the body; 20, 50.

Docosahexaenoic acid (DHA): One of the omega-3 fatty acids found in fish and thought to reduce inflammation and the risk of heart disease and AMD; 47, 49.

Drusen (plural), Druse (singular): Collections of abnormal material beneath the retinal pigment epithelium that are the first clinical signs of AMD. Drusen are round and appear yellow on clinical examination; 6-8.

Drusen have been divided into the following sizes for research purposes:.

Glossary and Index 146

2006-03-10T15:09:00.000-08:00

Bilberry: A perennial, ornamental shrub with berries (also called huckleberries in the United States). French researchers found that the jam from bilberries increased night vision of pilots in the Royal Air Force. Subsequent studies didn’t confirm these findings. There is no evidence that bilberry helps AMD; 53, 55.
Binocular vision: Vision that uses both eyes to form a combined image in the brain which results in three-dimensional vision.
Bruch’s membrane: A layered membrane that lies between the choriocapillaris and retinal pigment epithelium; 3-4.
Carotenoids: A large family of pigments synthesized by plants and play an important role in maintaining health. Beta-carotene is one carotenoid that is metabolized to vitamin A. Lutein and zeaxanthin are other carotenoids that are found in the macula; 39, 49.
Cataract surgery: Its effect on AMD; 21, 32-33.
Charles Bonnet Syndrome: Formed hallucinations caused by the brain in someone who has lost vision in both eyes; 108.
Choriocapillaris: Fine blood vessels in the inner choroid that lie next to Bruch’s membrane and are responsible for bringing nutrients to the RPE and outer retina; 84.
Choroid: The vascular, very middle layer of the eye. The choroid lies between the inner retina and the outer sclera of the eye; 3, 7, 8, 10, 16, 21.
Choroidal neovascularization: The ingrowth of abnormal blood vessels from the choroid beneath the retinal pigment epithelium and retina in AMD and other diseases; 40, 61, 65, 70, 72, 73, 74
Chromium: A trace mineral in the diet. Chromium insufficiency may cause problems with glucose metabolism. There is no evidence that supplementation with chromium is helpful in AMD; 54, 56.
Classic choroidal neovascularization: New blood vessels that fill early with fluorescein dye and then leak profusely. Classic neovascularization typically progresses more rapidly than occult neovascularization; 65, 72.

Glossary and Index 145

2006-03-10T15:06:00.000-08:00

ANCHOR: The acronym for the Anti-VEGF Antibody for the Treatment of Predominantly Classic Choroidal Neovascularization in AMD trial. This is an ongoing trial testing whether Lucentis® prevents vision loss in patients with AMD who have the classic type of choroidal neovascularization; 72.

Anecortave acetate: The generic name for Retaane®; 73.

Anecortave Acetate Risk Reduction Trial (AART): A trial underway in which patients who have AMD and neovascularization in one eye only are randomized to receive either 15 mg of anecortave acetate, 30 mg of anecortave acetate, or a placebo. The injections are given under the outside tissue on top of the eye every six months. The study is designed to determine if anecortave acetate reduces the risk of neovascularization in the second eye; 75.

Angular magnification: Increasing the apparent size of an object through the use of single or multiple lens systems, such as hand magnifiers or binoculars; 95.
Antioxidants: Vitamins and other molecules that eliminate reactive oxygen species and protect cells from damage; 37, 38, 40, 41, 48.

Atrophy: The most common cause of vision loss in AMD, Sometimes also called retinal pigment epithelial or geographic atrophy. Atrophy is a thinning and loss of tissue in the outer retina and retinal pigment epithelium which allows the underlying choroidal vessels to become visible; 8.
Avastin®: An antibody against vascular endothelial growth factor whose generic name is bevacizumab. Avastin is used to treat metastatic colon cancer and is the parent molecule of Lucentis®; 72.

Beta-carotene: A pigment found in fruits and vegetables which is converted to vitamin A in the body; 38, 40, 42, 43, 45, 46, 48, 51.

Bevacizumab: The generic name for Avastin®.

Glossary and Index 144

2006-03-10T15:03:00.000-08:00

Glossary and Index

Absorptive lenses: Glasses with tinted lenses used to absorb sunlight and prevent it from entering the eye. They are used to treat photophobia and to increase contrast; 101.

Age-Related Eye-Disease Study (AREDS): A large randomized study sponsored by the National Eye Institute which proved that supplementation with vitamins C, E, beta-carotene, zinc, and copper reduce the progression of AMD; 39.

Age-Related Eye Disease Study II (AREDS II): A study just started that will test whether supplementation with lutein and zeaxanthin as well as omega-3 polyunsaturated fatty acids will reduce the progression of AMD. AREDS II will also test if lower doses of beta-carotene and zinc are as effective as higher doses in reducing the risk of progression to severe AMD; 44.

Age-Related Macular Degeneration (AMD): A disease of the central retina first manifested by drusen in the macula. The disease can progress to atrophy of the outer retina or choroidal neovascularization.

a. Dry AMD: includes drusen and atrophy; 8.
b. Neovascular or wet AMD: blood vessels have grown from the choroid under the RPE and retina. These blood vessels leak fluid and blood and cause scarring; 10.
Alcon: The pharmaceutical and instrument company that makes anecortave acetate, or Retaane®.

Amsler grid: A checkerboard pattern of vertical and horizontal lines with a fixation dot in the middle. Used by patients to check for distortion or blank spots in their central vision; 10, 12.

AMD What to do 143

2006-03-10T15:00:00.000-08:00

A Final Word

We hope that you have found this book useful. Age-related macular degeneration is a serious disease but there are many things you can do right now to save your sight. And the future is looking very clear and bright. If you have any questions, you can contact us at:

MedRounds Publications Inc. http://www.medrounds.org/amd/

University of Iowa Center for Macular Degeneration http://www.c4md.org/

AMD What to do 142

2006-03-10T14:59:00.000-08:00

References – Chapter Eight

Age-Related Eye Disease Study Research Group. The Age-Related Eye Disease Study Severity Scale for age-related macular degeneration: AREDS Report No. 17. Arch Ophthalmol 2005; 123: 1484-1498.

Federal Citizen Information Center. “How to Find Medical Information.” 2005; Cited Nov 11, 2005. Available from http://www.pueblo.gsa.gov/cic_text/health/med-info/med-info.htm#how8.

Mitchell P, Foran S. Age-Related Eye Disease Study Severity Scale and Simplified Severity Scale for age-related macular degeneration. Arch Ophthalmol 2005; 123: 1598-1599.

Pirbhai A, Sheidow T, Hooper P. Prospective evaluation of digital non-stereo color fundus photography as a screening tool in age-related macular degeneration. Am J Ophthalmol 2005; 139: 455-461.

AMD What to do 141

2006-03-10T14:58:00.000-08:00

Other good websites:

The American Academy of Ophthalmology, http://www.aao.org/

The American Academy of Optometry, http://www.aaopt.org/

The American Macular Degeneration Foundation, http://www.macular.org/

The American Optometric Association, http://www.aoanet.org/

The Association for Macular Diseases, http://www.macula.org/

Foundation Fighting Blindness, http://www.blindness.org/

Lighthouse International, http://www.lighthouse.org/

The Macular Degeneration Foundation, http://www.eyesight.org/

The Macular Degeneration Partnership, http://www.amd.org/site/PageServer

The National Eye Institute, http://www.nei.nih.gov/

Prevent Blindness American, http://www.preventblindness.org/

Research to Prevent Blindness, http://www.rpbusa.org/

United States Department of Agriculture, http://www.usda.gov, particularly “What’s in food?” http://tinyurl.com/aucg7

American Dietetic Association, http://www.eatright.org/

AMD What to do 140

2006-03-10T14:56:00.000-08:00

Helpful and Accurate Websites

MedlinePlus.gov will direct you to information that helps answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news. The MedlinePlus Encyclopedia entry for AMD is at http://www.nlm.nih.gov/medlineplus/ency/article/001000.htm.

The list of AMD sites is at http://www.nlm.nih.gov/medlineplus/maculardegeneration.html

The National Institutes of Health, NIH Senior Health site has information on Macular Degeneration at http://nihSeniorHealth.gov/AgeRelatedMacularDegeneration/toc.html

The National Eye Institute has “Age-Related Macular Degeneration: What you should know.” at http://www.nei.nih.gov/health/maculardegen/armd_facts.asp as well as “Don't Lose Sight of Age-Related Macular Degeneration” at http://www.nei.nih.gov/health/maculardegen/armd_risk.asp

You can browse a list of Macular Degeneration Trials at Clinical Trials.gov http://tinyurl.com/7784x

The Department of Transportation has information about driving with macular degeneration at http://www.nhtsa.dot.gov/people/injury/olddrive/Driving_macular/
The Healthfinder database also has a list of government Macular Degeneration sites at http://www.healthfinder.gov/Scripts/SearchContext.asp?topic=513.

AMD What to do 139

2006-03-10T14:55:00.000-08:00

• Check for references. Is the information given in the website just opinion or fact? Are the claims backed up by the research literature? Look for a list of references at the end of the source. Information that’s backed up by other medical professionals and researchers is more likely to be accurate.
• Compare several different resources on the same topic. Check two or three independent sources to see whether the information or advice is similar.
• Ask yourself whether the information or advice seems to contradict what you've learned from your doctor or from reading. If so, talk to your doctor to clarify the differences in the information.
• Ask yourself if the information or advice “rings true.” Does it make sense? Is the information plausible? Does it jive with your common sense, or does it sound too sensational?
• Be cautious about making decisions based on information printed in newspapers and magazines or broadcast on television, radio, or news websites. Most reporters are journalists, not medical experts. Reporters may exaggerate a bit to attract more readers or viewers. Medical facts and statistics can be misunderstood, misinterpreted, misrepresented, or incomplete.
• Check to see whether the reporter cites a source for his information and includes the credentials of the persons cited.
• Is it an advertisement? Don’t trust medical product advertisements claiming miracle cures or spectacular results. Even if nothing is being sold on a website, ask yourself if the host of the site has an interest in promoting a particular product or service.
• Be cautious when using information heard at social gatherings, found on electronic bulletin boards, or during “chat” sessions with others. Testimonials and personal stories are based on one person's experience rather than on objective facts or proven medical research. Commercial sites often use testimonials from grateful users of their product instead of solid scientific information. There's no way to judge whether their stories are true or whether other customers have had a similar or a very different outcome.

AMD What to do 138

2006-03-10T14:54:00.000-08:00

• Google the authors. Check the author's credentials by looking up his or her affiliations, whether and where he or she attended college and medical school, and lists of his or her other publications.
• Who is responsible for the website? There should be accountability for the information displayed or printed. Credentials should be clearly displayed on the website. If the authors, organization, and credentials are missing, consider this a red flag. Anyone can set up a home page and claim anything.
• Government agencies, health foundations, and professional organizations are generally the best sources for unbiased material. The addresses of these websites usually end in .gov for government or .org for organization. Such groups would include the National Institutes of Health, the National Eye Institute, the National Advisory Eye Council, the American Academy of Ophthalmology, the American Academy of Optometry, and Research to Prevent Blindness, Inc. The American Heart Association and US Department of Agriculture have good information on nutrients in foods.
• Educational institutions (which have websites with addresses ending in .edu) usually provide reliable health-related information. However, you should be aware that these institutions are also competing for patients and research money so they may exaggerate the value of new treatments that are available at their institution.
• Websites with addresses ending in .com are commercial sites designed to sell you something. Their information is suspect. Some commercial sites get around this by calling themselves an organization. For instance, “The American Academy for the Treatment of Macular Degeneration.org” – it sounds good, doesn’t it? I just made it up. Anyone else could do the same and use a credible-sounding name and a .org designation to sell you something unproven. So you have to dig a little beyond just the name of the website to check the credentials of whoever’s responsible for it

AMD What to do 137

2006-03-10T14:52:00.000-08:00

Keeping Up on the Latest: The Internet
(by Patricia Duffel, R.Ph., M.A., Librarian, Department of Ophthalmology and Visual Sciences, The University of Iowa)

We believe that individuals with AMD should have ready access to the internet. The internet is a great tool for learning and is the best source for someone to find out the latest information about AMD. The internet is open to everyone and therein lies its strength and weakness. It’s freely available for all of us, and at the same time anyone can write pretty much anything on it. Therefore, one needs to be a savvy user to separate the wheat from the chaff or from the utter nonsense. Here are some tips for using the internet as a reference tool:

Don't Believe Everything You Read

Keep in mind that not all information is written by a qualified expert. No one regulates information on the internet. There is no guarantee that the information you find is accurate or up-to-date. However, it is possible to find accurate information on the internet or in print. Below we give you tips on how to evaluate the credibility and accuracy of information found on the internet.

Use Information Wisely

It can be hard to judge the accuracy and credibility of medical information. Even people with medical backgrounds sometimes find this task daunting. Magazines, television news, radio talk shows, newspapers, websites, friends, relatives, and acquaintances may or may not give you accurate information. Here are some tips to help you decide what information to believe:
• Consider the source. Was the article published in a peer-reviewed journal, where articles are reviewed by other qualified members of the profession for accuracy and reliability? Do medical experts serve as editors and review articles? Does a website have medical editors or consultants?

AMD What to do 136

2006-03-10T14:51:00.000-08:00

Most comprehensive ophthalmologists and many optometrists are competent at diagnosing dry AMD. Your doctor should be able to explain clearly why you’re losing vision and show you a picture of your eye.

You need a referral to a retinal specialist any time you lose vision rapidly or have distorted vision. You also need a referral if you don’t feel comfortable about what the doctor tells you. Some patients worry that they’ll offend their doctors if they ask for a referral. However, doctors shouldn’t feel offended and if they do, it’s probably a sign that you need to get another doctor anyway because this one is too arrogant. You must be your own advocate.

How can you tell whether the retinal specialist knows what he or she is doing?

The answer to this is pretty much the same as for the optometrist or comprehensive ophthalmologist. The retinal specialist should clearly explain to you why you are losing vision. He should show you the pictures of your maculas. He should tell you whether you have the wet form of the disease. In general, if you have new blood vessels, he should offer you one of the treatments listed in Chapter Five. If he doesn’t, he should explain why and recommend that he see you again in a month or two.

Are there super-specialists in the field of AMD?

There are experts in the field of AMD, but generally they will not offer you much more than your local retinal specialist. You can certainly travel to see an expert in AMD. These days, however, it might be easier to send him or her digital photographs of your eyes. Usually the specialist will be able to tell from your history and the pictures whether you are on the right track with your treatment.

AMD What to do 135

2006-03-10T14:49:00.000-08:00

Obtain an Amsler grid from your eye doctor. Call promptly if you notice any blurred or distorted vision that lasts more than a few hours.

If you have suffered vision loss, go to a good low vision clinic. Be sure to tell your doctor if you have any signs of depression. Remain active and don’t isolate yourself.

Special Concerns:

1. What kind of doctor should I see if I’m worried about age-related macular degeneration?

AMD is a common disease so the vast majority of optometrists (doctors of optometry who graduated from an optometry school) or comprehensive ophthalmologists (medical doctors who graduated from a medical school and then took an ophthalmology residency) should be able to diagnose the disease. Therefore, either of these doctors should be able to diagnose AMD.

If you need treatment, however, you probably should see a retinal specialist. A retinal specialist has had an additional one to two years of advanced training (called a fellowship) in the field of retina after he or she has completed a residency in ophthalmology.

2. How can I tell if my eye doctor knows what he or she is doing?

The knowledge you’ve gained in this book should help you be able to tell whether your eye doctor is competent. To summarize what was discussed in Chapter One: Your eye doctor should be able to tell you whether he sees drusen in your eyes; he should be able to tell you whether they’re large drusen and whether you have any other signs of AMD, such as pigmentation, atrophy, or neovascularization. He should also know about the results of the AREDS trial.

3. When do I need a referral?

If your eye doctor fails the above tests; in other words, if he or she bumbles and stumbles around when you ask if he sees drusen and what size they are, you should see someone else.