In this issue of A.V.R.E. InSight, we will be focusing on AMD, its definition, characteristics, and prevention and treatments. We will also talk about the value of the vision rehabilitation service programs offered by A.V.R.E. End of article.

What is Age-related Macular Degeneration?
Age-related macular degeneration (AMD) is a progressive, pain-free, incurable eye disease that is caused by the deterioration of the central portion of the retina, known as the macula. The retina is the inside back layer of the eye that records the images we see, converts them into electrical impulses, and sends them to the brain via the optic nerve. The macula is the portion of the retina that enables the eye to focus the central vision.

A person with AMD has blurred central vision, making it difficult to focus well enough to read, recognize faces and colors, drive a car, and see objects in fine detail.

Georgia O’Keeffe, the noted artist, had AMD and at the age of 89 she described her vision loss in this way: “It’s like there are little holes in my vision. I can’t see straight on very well. But around the edges are little holes where I can see quite clearly.” [A clear photo shows a guide dog puppy as it would be viewed by a person with normal vision. A blurry photo shows the same puppy with a blank space where its face is, as it would be viewed by a person with macular degeneration.] End of article.

The President's Corner, by Robert K. Hanye, President and CEO
Thanks to the generosity of an anonymous donor, we are able to send you this special edition of InSight. We have also been able to enhance our services for our consumers who have an eye condition known as macular degeneration. Seven out of ten people served by the Association for Vision Rehabilitation and Employment are over the age of 65. Of these consumers, about 80% have vision loss due to age-related macular degeneration, or AMD. The other two leading causes of vision loss in seniors are glaucoma and diabetic retinopathy. But clearly the most common problem faced by seniors is AMD.

Vision loss, according to the Broome County Office of Aging, is one of the top three health issues identified by seniors. This means that older people see vision problems as something that affects their overall health and independence. By directly comparing this with the high rate of AMD in older people who have a vision problem, it really means that AMD is one of the leading health issues of seniors.

The articles in this newsletter describe what AMD is in more detail, but briefly, it is a wearing out, or degeneration, of the part of the eye (the macula) that is responsible for our detail vision. If we have mac-gen, as it is often called, we lose our central vision and see mostly out of the sides of our eyes. We become much more sensitive to glare and both the type and location of lights. Moving in and out of shadows or bright light becomes a little more difficult. We also benefit greatly from magnifying things. This might include pill or food container labels, newspapers and magazines, small parts, computer screens, and so many other things.

The great news is that AMD does not mean that we cannot be as independent and happy as we once were. There are some fantastic devices, aids, and new ways of doing things that, with a little practice and attention, can help us all be successful. A.V.R.E. specializes in teaching these techniques and making the aids available. You might be amazed at what is available and can be done.

Seniors have some priorities and needs with respect to vision loss that are different than children or people who are in their working years (not that seniors don't work!). But many seniors are retired and concerned about retirement income, staying physically healthy and active, maintaining an active social life or staying in their own home. For these reasons, A.V.R.E. has started its "Senior Vision Services" programs. These are specialized services and activities that address these particular needs. Of course, they include such things as how to travel independently, skills on personal and home maintenance, meeting with peers to solve issues, how to use low vision aids and others. If you or someone you know can use these Senior Vision Services, just give us a call at 607-724-2428.

Macular degeneration, although generally associated with the aging process, is not restricted just to older people. Juvenile macular degeneration can occur at any age and can affect even young children. In fact, one of our own A.V.R.E. Vice Presidents has juvenile macular degeneration. Yes, he has made some adjustments and does some things differently than those of us without a vision loss, but he is still a leader and very successful in his home and work life.

We are especially grateful to an anonymous donor whose contribution has made this special issue possible and enables us to expand and improve our services for people with AMD. [Photo of Mr. Hanye. A diagram of an eye shows the location of the retina and the macula.] End of article.

Useful Definitions
Ophthalmologist: A physician who specializes in the structure, functions and diseases of the eye.

Optometrist: A licensed specialist who examines the eye for faults or changes in refraction and prescribes corrective lenses and exercises, but not surgery or medication.

Optician: A specialist who makes lenses to prescription and dispenses eye glasses or deals in optical devices or instruments.

Vision Rehabilitation Specialist: A specialist who trains people who have a severe vision loss in the skills, techniques and use of aids for independence in learning, working and living. Generally includes professions such as Orientation and Mobility, Rehabilitation Teaching, and Low Vision Specialist. End of article.

What Is Dry AMD?
Approximately 85% to 90% of the cases of AMD are the "dry" or atrophic type. Although it does not involve any leakage of blood or serum behind the retina, loss of vision still occurs when the light-sensitive cells in the macula (the central portion of the retina) slowly break down. This causes a gradual blurring of the central vision of the affected eye.

One of the most common early signs of dry AMD is the formation of small yellow deposits, known as "drusen", under the macula. These lead to a thinning and drying out of the macula, causing it to lose its function. The amount of thinning caused by the drusen, and their location, is directly related to the amount of central vision loss.

Dry AMD has three stages, all of which may occur in one or both eyes:
1. Early AMD: People with early AMD may have several small drusen or a few medium-sized drusen. At this stage, there are no symptoms and no vision loss. Nearly all people over the age of 50 have at least one small drusen in one or both eyes.
2. Intermediate AMD: People with intermediate AMD may have many medium-sized drusen, or one or more large drusen. At this stage, some people see a blurred spot in the center of their vision. They may require more light for reading and other tasks.
3. Advanced Dry AMD: In addition to drusen, people with advanced dry AMD have a thinning and breakdown of the macula, that causes the blurred spot in the central vision to become larger and darker. As the AMD progresses, it takes more and more of the central vision leaving blank spots, and straight lines may look wavy. Side, or peripheral, vision is rarely affected.

Dry AMD progresses much more slowly than the "wet" type, and there is no known cure. End of article.

What Is Wet AMD?
Approximately 10% to 15% of the cases of AMD are the "wet" or exudative type. In this type, abnormal blood vessels grow under the macula and retina. These new blood vessels may then bleed and leak fluid, causing the macula to bulge or lift up. This bulging can damage the photoreceptor cells in the macula, which distorts or destroys the central vision. The wet form is considered advanced AMD and vision loss may be rapid and severe.

People who have the wet type may see one or more dark spots in the center of their vision, due to blood or fluid under the macula. As with the dry form, straight lines may look wavy because the macula is no longer smooth. Once the wet type has developed in one eye, the other eye is at a relatively high risk.  Of the wet MD cases, nearly 90% are “sub-foveal." This means that the new abnormal blood vessels are beneath the very center of the macula. Of the subfoveal type of wet AMD, there are three sub-types:
1. Predominantly classic. Seen in about 25% of the subfoveal type of wet MD, the leaking blood
vessels are well-defined. This is usually the most aggressive form of subfoveal wet MD, and leads to quicker vision loss than the other subtypes.
2. Occult. Seen in about 40% of the subfoveal type of wet MD, all of the leaking blood vessels are hidden beneath the macula and are not well-defined. This subtype has the slowest rate of vision loss of the three.
3. Minimally classic. Also called "mixed", this subtype is seen in about 35% of the cases, and the rate of vision loss is between the other two types.

All people who have the wet form of AMD had the dry form first. The dry form can advance and cause vision loss without turning into the wet form; however, the dry form also can suddenly turn into the wet form, even during early stage AMD. There is no way to tell if or when the dry form will turn into the wet form. End of article.

What is Stargardt's Disease?
Macular degeneration, although primarily affecting the elderly population, is actually a group of diseases which may affect people of any age, including children.

Juvenile macular degeneration was first reported in 1901 by Karl Stargardt, a German ophthalmologist from whom the disease gets its name. Early onset, or juvenile, macular degeneration is more correctly called macular dystrophy. Stargardt macular dystrophy begins to damage both eyes between the ages of about 6 and 20, although changes may come slowly and visual impairment may not be noticeable until ages 30 to 40. Children first notice a difficulty in reading, and can complain of gray, black, or hazy spots in the center of their vision. It may take longer for their eyes to adjust between light and dark.

In 1997, it was discovered that Stargardt's is genetically inherited and more than one family member may develop it. There is no known cure for this disease and there is little that can be done to slow its progression. As it is a rare disorder, it is not widely studied at this time. End of article.

Symptoms of AMD.
In the very beginning stages, AMD has no symptoms. It can only be detected by an eye care professional, during an eye examination in which the pupils are dilated.

In the early stages, many people may not notice any changes in vision because only one eye is affected, while the other continues to see well. Because the brain often compensates, vision loss may not be noticed until both eyes are affected.

When symptoms do begin to appear, they can include any of the following: the need for more light when reading; fuzzy, blurry, or distorted vision; each eye may perceive the size or color of an object differently, or it may become difficult to distinguish colors at all; in the more advanced stages, blank spots or empty areas in the center of vision may occur; the classic symptom of wet AMD is that straight edges and lines, such as sides of buildings, telephone poles, or sentences on a page appear crooked or wavy.  A self-test can be done regularly at home by looking at the Amsler grid, top right. Cover one eye, look at the grid with the other eye at normal reading distance. Repeat using the other eye. If the lines look distorted or wavy, contact your eye doctor immediately.

It is important to remember that symptoms of AMD may resemble other eye conditions. If you are experiencing any of the above symptoms, see your eye doctor immediately for an accurate diagnosis. [Two diagrams show the Amsler grid: one as it appears to a person without AMD, and the other as it appears to a person with AMD.] End of article.

Your Eye Exam.
Everyone, regardless of age, should have an eye exam once a year to routinely check for eye problems and diseases. During the exam, the doctor will ask about your medical history, changes in your vision, and will check your eyesight. You will also be given tests that can detect not only AMD, but other eye problems such as glaucoma and retina detachments.

The doctor may have you look at an Amsler Grid. If the lines appear curved or wavy, it may be a sign of early AMD. The doctor will want to closely examine the retinas in your eyes. In order to be able to adequately look at your retina, the doctor will give you eye drops that enlarge, or dilate, the pupil of the eye. He will then use instruments to look into your eyes and closely examine the retina for signs of AMD.

The doctor will look for the presence of drusen, the tiny yellow deposits that form under the retina. Although the presence of one or two small drusen does not necessarily indicate AMD, the presence of medium-sized or large ones is cause for concern. He will also check for abnormal blood vessel growth, leaking blood vessels, and any other changes in your retina.

If AMD is diagnosed and the doctor suspects you may have the wet type, he may do a test called a "flourescein angiography" to check for leaking. This involves the injection of a plant-based dye into a vein in your arm. As the dye flows through the tiny blood vessels in your eye, the doctor will take photographs which will be used to pinpoint the location of the abnormal blood vessels for possible treatment.

While there is no cure for AMD, there are treatments that can slow the progression from the early stage to the advanced stage. That is why early detection is so important. Sight is precious! Have a yearly eye exam! End of article.

Treating Dry AMD
At this time, there is no cure for AMD. Once dry AMD reaches the advanced stage, no form of treatment can prevent loss of vision. However, there is a treatment that can slow the progression of AMD from the intermediate stage to the advanced stage, where the most vision loss occurs.

In 1992, the National Eye Institute (part of the Federal government's National Institutes of Health) began a 5-year study called the Age-Related Eye Disease Study, or AREDS. This study was designed to determine the effects of high doses of antioxidants (certain vitamins) and zinc on the development and progression of AMD and cataracts.

About 3600 people, ages 55 - 80, enrolled in the study. They were divided into categories ranging from those with no AMD to those with advanced-stage AMD. Within each category, participants were randomly selected to receive one of four treatments: 1. zinc alone; 2. antioxidants alone; 3. both antioxidants and zinc; 4. a placebo.

While a miracle cure was not found, the news is good! The study found that taking a specific formulation of antioxidants plus zinc can slow or delay the progression of intermediate AMD to the advanced stage -- the stage in which the most vision loss occurs. The progression was reduced by about 25%. The study did not show any significant slowing between the early stage of AMD and the intermediate stage.

It is important to remember that the AREDS formulation will not restore any vision that has already been lost. However, the results are very encouraging for those already at the intermediate stage of AMD. Slowing this progression has the potential of saving the vision of many people. End of article.

The AREDS Formulation.
People who are at a high risk of developing advanced-stage AMD should consider asking their doctor about taking the AREDS formulation.

The specific AREDS formulation consists of 500 milligrams of vitamin C, 400 IU of vitamin E, 15 milligrams of beta-carotene (often labeled as equivalent to 25,000 IU of vitamin A), 80 milligrams of zinc oxide, and 2 milligrams of copper as cupric oxide. Copper was added to the original AREDS formulation to prevent copper deficiency anemia.

It is always a good idea to eat a healthy diet as part of a healthy lifestyle, but diet alone will not provide the same high levels of antioxidants and zinc as the AREDS formulation. Neither will taking a standard daily multivitamin.

Some AREDS participants reported minor side effects from the treatment. A low percentage had urinary tract problems that required hospitalization, and for people who are heavy smokers, taking beta-carotene may increase the risk of developing lung cancer.

The AREDS formulation is manufactured by several companies and is available without a prescription. However, as with any medication or diet supplements, you should discuss with your doctor whether it is right for you. End of article.

What About Lutein?
In recent years, an antioxidant called lutein has been the focus of much attention. It is believed that this naturally occurring substance may play an important role in eye health. Very recently, a 1-year study called the "LAST" study was conducted at the North Chicago VA Medical Center. The results of this small, short-term study showed improvement of several vision-related symptoms in male patients with AMD who were given lutein supplements. But it is important to understand that the claims made about an association between lutein and eye health are still speculative and should be viewed with caution.

The National Eye Institute is currently conducting a pilot study to see how well lutein is absorbed into the bloodstream in people over age 60. This is in conjunction with another study that will provide information needed to conduct clinical trials that can evaluate the effectiveness of lutein supplements on the progression of AMD. End of article.

Treating Wet AMD.
Currently, there are two treatments for wet AMD. Neither treatment is a cure, but either treatment may have the potential of slowing the rate of vision decline.

Laser Surgery. Also called "laser photocoagulation", this procedure uses a laser to destroy the abnormal, leaky blood vessels that have grown under the macula. A high energy beam of light is aimed onto the blood vessels and destroys them, stopping their leakage.
There are several drawbacks to this treatment: 1. Only a small percentage of people with wet AMD can be treated with laser surgery; 2. Laser treatment leads to an immediate reduction in central vision because it destroys some of the surrounding retina tissue. But with sufficient follow-up, the amount of vision loss is less in laser treated eyes than in untreated eyes; 3. The risk of new blood vessels developing after laser treatment is high. Repeated treatments may be necessary, and in some cases, vision loss may progress despite repeated treatments.

Photodynamic Therapy. Approved by the FDA in 2000, this treatment involves using a drug in combination with light. The drug is injected into your arm and travels through the body, into the abnormal blood vessels in your eye. A light is shined into your eye, which activates the drug. The activated drug destroys the new blood vessels without destroying surrounding healthy tissue. The procedure is relatively painless and takes about 20 minutes. You must avoid exposing your skin or eyes to direct sunlight or bright indoor light for five days after the treatment. While photodynamic therapy slows the rate of vision loss, it does not stop vision loss or restore vision already damaged by wet AMD. Treatments may need to be repeated. End of article.

Who Is At Risk For AMD?
The main risk for developing age-related macular degeneration is simply growing older. AMD can begin in the middle-age years and the risk increases with the natural aging process.

Besides age, there are several characteristics that many people with macular degeneration appear to have in common. Family history: people with a family history of AMD are at higher risk of developing the disease. Ethnic background: white Caucasians are much more likely to develop AMD than African Americans, and having blue or light-colored eyes may also increase the risk. Gender: women appear to be at greater risk than men. Obesity: research studies suggest a link between obesity and the progression of the early and intermediate stages of AMD into the advanced stage. Smoking: studies also suggest a link between smoking and AMD. The sun: very new research results show a possible connection between AMD and sunlight exposure to both the skin and the eyes. The presence of drusen (the yellow deposits in the retina): this is one of the most common early signs of AMD. While the presence of a few small drusen alone does not mean the disease is present, it may mean a higher risk of developing AMD. End of article.

AMD And Your Lifestyle.
Because the cause of macular degeneration is not clearly understood at this time, there are no proven methods of prevention. However, there may be ways to minimize your risk of developing it. Studies have shown that maintaining a healthy lifestyle may play a role. They include these suggestions: do not smoke; watch your weight; exercise regularly; maintain a normal blood pressure level; eat a healthy diet high in green leafy vegetables and fish.

Very recent studies show that spending too much time in the sun may raise the risk of developing AMD. Researchers have found that people who spent more than 5 hours a day in the summer sun in their younger years were twice as likely to develop early AMD than those who stayed out of the sun. The study also showed that wearing hats and sunglasses regularly reduced the risk of developing drusen under the retina by about 50%.

Protect your skin and eyes from the sun. Have a comprehensive dilated eye exam once a year, because early detection could help slow the progression of AMD. If you have dry AMD, ask your doctor about taking the AREDS formulation, and check your vision with the Amsler grid on a regular basis. If you have wet AMD and your doctor advises treatment, do not wait. End of article.

AMD Research
Research and clinical trials to look at causes, treatments and a cure for AMD are ongoing and are progressing. A number of studies are being conducted and supported by the National Eye Institute and other organizations.

Here are some examples that scientists are studying: transpupillary thermo-therapy, a treatment for wet AMD that uses a low dose of infrared laser light, without accompanying drugs and with no damage to surrounding tissue; the use of anti-angiogenic drugs that show great promise in stopping the development of the abnormal blood vessels in the eye that cause wet AMD; looking at certain anti-inflammatory treatments for wet AMD; studying the possibility of transplanting healthy cells into a diseased retina; evaluating families with a history of AMD to understand genetic and hereditary factors that may cause the disease.

Understanding AMD in all of its forms is progressing steadily. Public education is so important in helping people who have the disease to be able to discuss the condition with their doctor and to make decisions about therapy, treatment, and vision rehabilitation. End of article.

Introducing: A.V.R.E. Senior Vision Services, by Robert Hanye, President and CEO.
Senior Vision Services is our new program at A.V.R.E designed especially for people who are 55 or older who now have a severe vision loss. Our staff of specialists understands the unique vision loss issues of older people and other significant life issues faced by all of us as we age.

We have been assisting older people for a long time, as part of our general services for people who are blind. The new ingredients are that we now have a program dedicated to older people, and we can now also help individuals who have a severe vision loss but who are not legally blind.

There are many aspects to our Senior Vision Services program. They include our traditional services of travel training (Orientation and Mobility), Rehabilitation Teaching (Independent living and Communications), and Low Vision Services. Now we are including a much broader approach with things like peer groups of older people. These give seniors with a vision loss a chance to meet other people in similar situations. Older people with vision loss now know they are not alone and can share problems and solutions. These groups can include discussions, speakers, training and many other things depending on what the people in the group would like. We are also working much more closely with other organizations and agencies such as the county Offices for the Aging. This past year we held some Seminars For Seniors right here in our building that covered legal issues in such a way that the information was accessible for people with low vision.

As we grow, we will add more and more to our Senior Vision Services. So if you have ideas, just let us know.

Why is A.V.R.E. important to people who have macular degeneration? That's a great question with an even better answer! First and foremost, many if not most people think that they are going to be helpless and have to depend on someone else to do even the simple things in life. This is absolutely not true! We all get pretty dependent on our vision if we have had it for most of our lives, so it is natural to think that seeing is the only way that we can be independent. The truth is that there are many ways to skin a cat and be successful. Let me give you just a few examples of other ways to do things.

Did you know that it is safe and relatively easy to cook even if you have advanced macular degeneration? We can help you put marks on your stove, microwave or other kitchen appliances so that you can tell what the settings are for different foods. We can introduce you to a great variety of cooking utensils such as specially marked measuring devices, cutting knives with safety guards, spatulas with an upper and lower part to hold food items and so many more. How about talking timers that tell you when the food has been cooking for the right amount of time or talking thermometers to tell you the temperature of cooking meats! A.V.R.E. staff can guide you in choosing the tools you need.

Are you working, losing your vision and afraid to tell your boss? Did you know that there are computer software packages that make the print larger so you can still see what is on the screen or can talk to you with the words on the computer? With practice and good instruction you can learn how to use these through A.V.R.E.

Did you just lose your driver's license and you now think you are stuck at home? Well, there are lots of ways to solve this one! We can teach you how to travel safely and independently even though you no longer drive. We can work with you on being "solutions oriented" such as increasing your networking skills and how to look for transportation alternatives. People who have a severe vision loss travel around the block and around the world safely and independently all the time. Why not join them?

Do you know how important glare and color contrast are for people with macular degeneration? Sometimes just changing the location of a light, its intensity or the type of bulb can make a world of difference. Using colors in contrast can help not just you but all of us. Think how much easier it would be to see a red plate on a white placemat!

Most importantly, A.V.R.E. can help you change how you think about macular degeneration. We can show you how to be successful and we can introduce you to other people who have been there before you and found answers.

All of these and more are why Vision Rehabilitation and A.V.R.E are important to people with macular degeneration. End of article.

Did You Know?
Edgar Degas and Georgia O’Keeffe painted with it. Sam Snead golfed with it. Victor Borge and Bob Hope made us laugh with it. Stephen King writes with it. Marla Runyan runs with it. Don Knotts has never been more serious as he advocates for it. Ken Fernald, our Vice President of Operations, works with it. Yes, all of these people were told they have macular degeneration. All of these people faced it, overcame the difficulties it presented, and continued to lead full, productive and successful lives with it. And you can too!

A diagnosis of AMD does not have to mean the end of your life as you have known it. Early detection, diligent care and treatment by your eye doctor, arming yourself with knowledge, and the valuable assistance of A.V.R.E. Program Services Staff can help you to continue living a full, rich and independent life. End of article.

Our Sources.
Age-Related Macular Degeneration; What You Should Know. Bethesda, Maryland: U.S. Department of Health and Human Services National Eye Institute, 2003.

American Macular Degeneration Foundation. www.macular.org (October 2004).
InTouch Newsletter. Wichita, Kansas: Envision Rehabilitation Center, Summer 2004.
Macular Degeneration Support. www.mdsupport.org (October 2004).
National Eye Institute. www.nei.nih.gov (October 2004).
End of article.

Bequests: A Lasting Legacy.
By including A.V.R.E. in your estate planning, you will help to ensure that we can continue to provide our valuable Senior Vision Services Program for many years to come. If you would like to remember A.V.R.E. in your will, please contact Jean Caporal, Director of Development, at 607-724-2428, ext. 132, for information. End of article.

Have a Happy and Joyous Holiday Season!

Publishing information.
InSight is published quarterly by the Association for Vision Rehabilitation and Employment, Inc. (Formerly Blind Work Association), 55 Washington St., Binghamton, NY 13901. Phone: 607-724-2428 FAX: 607-771-8045 Email: avreinfo@avreus.org. Website: www.avreus.org. Editor: Joyce Bucci

A.V.R.E. is a local, private, non-profit organization with a volunteer board of directors. We serve visually impaired individuals of all ages who live in the New York counties of Broome, Chemung, Chenango, Cortland, Delaware, Otsego, Tioga, Tompkins and Schuyler, as well as the Pennsylvania counties of Bradford, Susquehanna and Tioga.

A.V.R.E. is an Affirmative Action and Equal Opportunity Employer. If you would like more information about A.V.R.E. or its services, please feel free to contact us.

Our vision is to be the first in choice and quality with respect to vision rehabilitation and employment services in the Twin Tiers, and to be a model for the broader community in understanding vision disability.
End of newsletter.