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AFBAmerican Foundation®
for the Blind

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Macular Degeneration Guide

Introduction

Age-related macular degeneration (AMD) is occurring at a rapid rate in this country. According to the American Academy of Ophthalmology (AAO), 10-15 million individuals have the condition and about 10 percent of those affected have the wet type of MD ("Are You at Risk," 2010).

Risk Factors

According to the AAO, if you have at least two of the top-five risk factors listed below, you should get a thorough eye examination by an ophthalmologist or other medical eye specialist and learn what you can do to reduce your risks ("Are You at Risk," 2010).

  • Smoking
  • Obesity
  • Age (Over 60 Years Old)
  • Hypertension
  • Family History of AMD

Smoking

Current smokers have a two-to-three times higher risk for developing MD than people who have never smoked. Quitting smoking can reduce your risk of developing MD (Thornton et al., 2005).

Obesity

Being obese doubles the risk of developing advanced macular degeneration (van Leeuwen et al., 2003). Losing weight via a healthy diet and regular exercise can reduce your risk of developing MD. For more information, see the Ways to Reduce your Risk section in this article.

Age (Over 60 Years Old)

Although AMD may occur earlier, studies indicate that people over age 60 are at greater risk than those in younger age groups. For instance, a large study found that people in middle age have about a 2 percent risk of getting AMD, but this risk increased to nearly 30 percent in those over age 75 ("Facts About," 2009).

Hypertension

The National Eye Institute's (NEI) Age-Related Eye Disease Study indicated that persons with hypertension were 1.5 times as likely to develop wet macular degeneration compared with persons without hypertension ("Facts About," 2009).

Family History of AMD

Studies indicate that having a parent, child, or sibling with macular degeneration can mean your chances of developing the condition are 2.5 times higher than people with no close relatives with AMD (Fine, Berger, Maguire, & Ho, 2000). Further, your lifetime risk for developing MD can be up to four times higher if you have close relatives with the condition. While not all MD is hereditary, certain genes have been strongly associated with a person's risk of MD, and genetic predisposition may account for half the cases of AMD in this country (Haines et al., 2005).

Other Possible Risk Factors

  • Gender. Women appear to be more at risk of AMD than men ("Facts About," 2009).
  • Race. Whites are much more likely to lose vision from AMD than African Americans ("Facts About," 2009).
  • Exposure to Sunlight. Exposure to blue light waves may damage the macula. This exposure can be limited by sunglasses such as NOIR glasses, which have a yellow tint that blocks blue light waves. In addition, eating green and leafy vegetables can help. See the "Ways to Reduce your Risk" section in this article for more dietary guidance.
  • Heart Disease. Macular degeneration is also linked to coronary heart disease ("Positive Trend," 2009).

Ways to Reduce Your Risk

Get Moving

Incorporate exercise into your every day life. (See the Senior Site Exercise Section.)

Eat Healthily

Dr. Lylas Mogk (2003), noted ophthalmologist and author on macular degeneration, offers the following suggestions:

1. Eat a lot of dark green leafy vegetables like kale, collard greens, and spinach. These types of vegetables contain a lot of lutein, which protects the macula from sun damage, just as it protects the leaves from sun damage.

2. Eat fatty fish regularly. These types of fish are high in omega-3 fatty acids, which help decrease inflammation and promote eye health.

3. Avoid packaged foods as much as possible. It's important to keep a balance between omega-6 fatty acids and omega-3 fatty acids in our diets. Virtually every food in a package contains omega-6 fatty acids in the form of vegetable oil. We need to increase our intake of omega-3s and decrease our intake of omega-6s.

4. Avoid artificial fats. Low-fat foods are good options if they've achieved their low-fat status through a process that physically removes the fat. Skim milk and low fat cottage cheese are examples of these types of good low-fat foods. A low-fat cookie or a no-fat cake, however, is a nutritional oxymoron. Usually a low-fat or no-fat label on baked goods doesn't mean less fat was used in the production of the food, but that an artificial fat was used, usually partially hydrogenated vegetable oil. These types of fats are artificial ingredients made in a laboratory and our bodies can't metabolize them. So, it's best to eat real cookies, just don't eat the whole dozen!

Stop Smoking

Your risk of AMD will begin to drop immediately.

Lower Blood Pressure and Lose Weight

Follow your doctor's orders.

Schedule Regular Eye Evaluations

If you have not had an eye exam by an ophthalmologist in three or more years, you may qualify for help from the AMD Eye Care Program offered through the AAO. The program provides free eye exams for individuals who have not been diagnosed with AMD, are age 65 and older, are U.S. citizens or legal residents, and do not belong to an HMO or the VA. Call the toll-free helpline at 1-866-324-EYES (3937) for more information.

Questions to Ask Your Doctor

If you have been diagnosed with AMD, or are expecting a diagnosis of AMD, you may feel overwhelmed and unsure of what to ask when you visit your doctor for your exam. The list of questions below was developed by an ophthalmologist for AFB Senior Site. The next time you visit your doctor, print this list and bring it with you for guidance.

  1. What is the diagnosis?
    1. What tests were used to make this diagnosis?
    2. Are there any symptoms or changes I should watch for?
    3. What caused the condition?
    4. Is it hereditary? Do I need to get my relatives checked?
  2. What kind of eye care professional(s) (Ophthalmologist, Subspecialist, Optometrist, Low Vision Specialist) would be best to monitor/treat my condition?
    1. Which kind of eye care professional are you? Are you a medical doctor?
    2. How often should I see you or any other eye specialist?
  3. Can my condition be treated?
    1. What are the preferred treatments for my condition? Laser surgery? Medications or vitamins? Injections?
    2. What are the risks/benefits/alternatives for these treatments and what is the recovery period?
    3. Will anesthesia be used for any of these treatments? What type?
    4. When should the treatment start and how long will it last?
    5. Will there be any pain or discomfort associated with my treatment? If so, how long will it last?
    6. How often do you anticipate that I will need to return for follow up to monitor the treatment?
    7. Are there food/drugs/activities I should avoid while undergoing this treatment?
  4. What kind of tests are involved for ongoing care and how often will I need them?
    1. What do you expect to find out from these tests?
    2. When will we know the results and can you explain them?
    3. Do I have to do anything special to prepare for these tests?
    4. Do the tests carry any risks or side effects?
    5. Will you send the test results to my primary care physician?
  5. Are there things I can do to monitor my own eye condition? I have heard of the Amsler grid. Should I use one?
  6. What happens if my treatments do not help enough and I still have vision problems?
  7. Should I begin making any lifestyle changes such as exercise, diet, cessation of smoking, routine daily living?
  8. Are there services or products that will help, such as: magnification, special devices, or services for people experiencing vision loss? See the AFB Senior Services Directory.

Treatments

Treatments differ for the wet and dry types of macular degeneration; new research is ongoing. Learn more about new clinical research on treatments for macular degeneration by listening to a lecture on "Macular Degeneration: Stepping into the New Decade" given at the American Foundation for the Blind Center on Vision Loss in Dallas by ophthalmologist, Robert Witherspoon, M.D.

Wet Type

Only about 10 percent of older persons who have MD have the wet type. Currently the most common treatments for wet-type MD are laser surgery, photodynamic therapy, and anti-VEGF therapy. None of these treatments are a cure for MD, but all have been shown, with varying results, to slow the advancement of the disease. Repeat treatments will often be necessary.

Laser surgery. A small percentage of people with wet MD can be treated with laser surgery ("Facts About," 2009). The surgery involves destroying leaky blood vessels of the eye by aiming a beam of high-intensity light at them.

Photodynamic therapy. In photodynamic therapy, a drug that has a tendency to adhere to new blood vessels is injected into the arm. The drug travels throughout the body, including through the blood vessels in the eyes. The drug is activated by exposing the eyes to light. The activated drug destroys the new blood vessels in the eye ("Facts About," 2009).

Anti-VEGF therapy. Wet AMD can now be treated with new drugs that are injected into the eye multiple times. These injections can slow vision loss and, in some cases, improve vision ("Facts About," 2009).

Dry Type

According to the NEI ("Facts About," 2009), when dry AMD reaches the advanced stage, no treatment can prevent vision loss. However, studies indicate that vitamin therapy is a possibility for intermediate-stage AMD. The NEI's Age-Related Eye Disease Study found that taking a specific high-dose formulation of antioxidants and zinc significantly reduces the risk of advanced AMD and vision loss ("Antioxidant Vitamins," 2001). Check with your doctor to find out if this vitamin formulation will help you.

AREDS Vitamin Formula. The specific daily amounts of antioxidants and zinc used in this therapy are ("Antioxidant Vitamins," 2001):

  • 500 milligrams of vitamin C
  • 400 International Units of vitamin E
  • 15 milligrams of beta-carotene (often labeled as equivalent to 25,000 International Units of vitamin A)
  • 80 milligrams of zinc as zinc oxide
  • 2 milligrams of copper as cupric oxide

Copper is included to prevent copper-deficiency anemia, a condition associated with high levels of zinc intake.

Check the NEI web site for reliable and up-to-date information.

Tips for Living with Macular Degeneration

Macular degeneration may affect your vision as follows:

  • Diminished ability to see detail, such as text and faces
  • Presence of a spot or "scotoma" near the center of vision, and/or distortion, blurriness, and waviness in lines, text, and faces
  • Reduction in light; things appear darker
  • Diminished ability to see things that are in poor contrast

To see how people with macular degeneration see, watch our Vision Simulation Video.

Pictured below is how a person with macular degeneration sees:

a busy street scene, as it would be perceived by someone with macular degeneration. There is a large blurry spot in the center of the field of vision.

Despite these challenges, there are things you can do to help you continue to successfully manage your everyday tasks. You can find a number of tips on Senior Site but here are two suggestions that can help you right away:

Eccentric Viewing

MD affects central vision the most. To help you minimize the impact of the spot (or distortion/blurriness) that you may have near the center of your vision, practice eccentric viewing by learning to look slightly to the side (or up or down). When viewing your TV screen, dinner plate, or reading material, imagine that you are looking at a clock face. While focusing at the center of the monitor, plate, or text, look to the right towards 3 o'clock, then to the left towards 9 o'clock, and so on through the positions of the numbers on the clock face. Determine which clock position helps you see items in the center of your field of vision better. You may also try moving your dinner plate or reading materials to the side (the same clock position that you found most helpful to look towards), in order to see them better. By moving the object slightly to the side (or up or down), your eyes will follow, and you will see "around" the distortion or spot more easily, and probably more clearly, than if you look straight down.

Improved Lighting

Due to macular degeneration, things may appear darker, mainly because of damage to the cone cells on your retina, which receive and process light. Try using an inexpensive gooseneck lamp, available at many stores for about $15, to provide extra light on the desk or table where you eat, write, read, and do other tasks. Position the lamp close to you and to the side. When you need to plug something in or turn a key, use a bright flashlight (such as the new LED flashlights) to shine more light on your task. Purchase a few press-on battery operated lamps to attach to the wall of a closet to help you pick out your clothes, or apply them to the inside of your cupboards to help you see your dishes. An LED press-on lamp, while slightly more expensive than the older, incandescent models, will last much longer (often several years) and be much brighter.

Improved lighting and slight eccentric viewing can make a considerable difference in how well you see.Employing these strategies will help you be more successful in all tasks that you want to do.

For more tips on lighting check out the Better Lighting for Better Sight videos.

For tips on living with vision loss check the Daily Living section of AFB Senior Site.

Ways to Cope with Vision Loss from Macular Degeneration: A Family Affair

Below are perspectives from a mother and a daughter on how they managed a diagnosis of macular degeneration.

Esther and her daughter Gwen, laughing

Esther (Mother):

Fifteen years ago, when I first started having vision problems because of the wet type of MD, I thought the enjoyment in my life was over. I felt completely devastated, at least for a while, and did not feel like doing anything, even with my friends and family. I just wanted to sit in a corner and feel sorry for myself.

Gwen (Daughter):

I was worried about Mother. She has always been a fighter, but she was really having a problem adjusting. So I started doing research to find some help and solutions.

Esther:

Gwen would not take "no" for an answer. She did the "legwork" and found out about services and products that could assist me in continuing to live normally. She also figured out things she could do to help me, such as wearing light colored shoes when we were walking so that I could follow her easily, or giving me verbal cues such as counting steps aloud as we ascended or descended a staircase.

Gwen:

At that time, there was not as much public awareness of AMD and resources were few. Even offices of ophthalmologists did not have pamphlets or lists of resources for aids. The Internet has made searching for resources, even international ones, much easier. However it is important to remember that anything can be posted on the Internet and there is a lot of mis-information and untried treatments there also. Choose a recognized, reputable site like the Senior Site, and try the things that fit with you personally.

Esther:

Today, I am a different person. I enjoy my family, I still travel, I go to the opera and plays, use a computer with speech, mentor people with vision loss at the Center on Vision Loss in Dallas, you name it. I found out that I could still enjoy almost all activities. The difference is that, for the most part, I have had to find a different way of enjoying what I did before. That is the challenge. Who does not truly enjoy finding a challenge and overcoming it? A man I once knew said that there are always answers to every problem: all you have to do is find them. My family and friends have been extremely helpful in finding those answers. The answers are found in your core strength, being willing to be open to finding solutions but understanding that those solutions may require you to do things slightly differently. The answers are found in researching the subject; talking to your doctor about available treatments; being willing to persevere with those treatments; maintaining patience with trial and error; and accepting a great deal of love and persistence from family and friends. My daughter was relentless in pushing and encouraging me. I learned from her that mistakes are expected and forgiven. Learning to be independent with courage is respected by all.

Gwen:

As with anything that is new to us, talking to others in the same situation is very helpful to gain insights as to what works and how to handle challenges and to anticipate future needs. The Dallas AFB Center on Vision Loss has become a central resource for people-to-people connection and for learning of the resources available to anyone with vision loss. It is particularly helpful to families who want to be enabling but not interfering. Most family members realize that AMD has hereditary implications so it is educational for those of us not yet experiencing vision loss to understand ways to prevent, delay and adjust to vision changes. There are agencies that serve people with vision loss throughout the country. Check out the AFB Directory of Services to find one in your area.

Esther:

Today, the greatest gift that I can give my family is to continue to be independent and positive, but not to deny or delay asking for assistance as needed. Family history is one of the main risk factors of MD. My mother had MD, I have MD, and my daughters and their children are at risk as well. Knowing that my family sees how I try to handle this challenge gives me even more incentive and courage. Our friends and family need to know that if they experience vision loss, life is not over. We can cope and continue to enjoy a very full and productive life.

So family members: if your mother or father is experiencing vision loss, be there for them. Do not coddle them but do the research and be aware of what your parent is experiencing and what you can do to help. Use AFB Senior Site to find services that are available in your community and get some commonsense solutions to doing everyday tasks. The answers are there if you look for them. Be patient but tough and understanding.

To find more tips from Esther, check out Esther's Insights or view the video, Esther and Gwen: A Mother and Daughter Story.

AFB Senior Site offers information on every aspect of living with vision loss. Explore the site to find out more.

References

Antioxidant Vitamins and Zinc Reduce Risk of Vision Loss from Age-Related Macular Degeneration. (2001). National Eye Institute web site. Retrieved from www.nei.nih.gov/news/pressreleases/101201.asp

Are You at Risk for Age-Related Macular Degeneration (AMD)? Learn the Top 5 Risk Factors. (2010). American Academy of Ophthalmology web site. Retrieved from www.aao.org/newsroom/release/20100303.cfm

Facts About Age-Related Macular Degeneration. (2009). National Eye Institute web site. Retrieved from www.nei.nih.gov/health/maculardegen/armd_facts.asp

Fine, S.L., Berger, J.W., Maquire, M.G., & Ho, A.C. (2000). Age-Related Macular Degeneration. New England Journal of Medicine, 342(7), 483-91.

Haines, J.L., Hauser, M.A., Schmidt, S., Scott, W.K., Olson, L.M., Gallins, P., Spencer, K.L., Kwan, S.Y., Noureddine, M., Gilbert, J.R., Schnetz-Boutaud, N., Agarwal, A., Postel, E.A., & Pericak-Vance, M.A. (2005). Complement Factor H Variant Increases the Risk of Age-Related Macular Degeneration, Science, 308 (5720), 419-421. doi:10.1126/science.1110359.

Mogk, L. and Mogk, M. (2003). Macular Degeneration: The Complete Guide to Saving Your Sight. New York, NY: Ballantine Books.

Positive Trend Found for Diabetic Eye Health; Macular Degeneration Linked to Heart Disease; How Poor Vision Impacts Social, Economic Success. (2009). American Academy of Ophthalmology web site. Retrieved from: www.aao.org/newsroom/release/20091001.cfm

Thornton, J., Edwards, R., Mitchell, P., Harrison, R.A., Buchan, I., & Kelly, S.P. (2005). Smoking and Age-Related Macular Degeneration: A Review of Association. Eye, 19(9), 935-944.

van Leeuwen, R., Klaver, C.C.W., Vingerling, J.R., Hofman, A., & de Jong, P.T.V.M. (2003). The Risk and Natural Course of Age-Related Maculopathy: Follow-up at 6 1/2 Years in the Rotterdam Study. Archives of Ophthalmology, 121(April), 519-526.

Resources

AFB Press

Duffy, M., (Ed.). (2002). Making Life More Livable. New York, NY: AFB Press. (Print, online, cassette)

Orr, A., & Rogers, P. (2006). Aging and Vision Loss: A Handbook for Families New York. New York, NY: AFB Press. (Print, ASCII CD-ROM, online)

Reingold, N. (2007). Out of the Corner of My Eye. New York, NY: AFB Press. (Book and audio)

Other Publishers

Roberts, D.L. (2006). The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed. New York, NY: Marlowe & Company. (Print; audio is available free through the Library of Congress.)

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