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Hope and Rehabilitation for AMD: What is Low Vision Rehabilitation?
By: Candice A. Law, O.D., M.S., F.A.A.O.
As eye doctors, we are accustomed to talking to our patients about their diagnosis and treatment options. We can rattle off a slew of information regarding medical and surgical interventions until your ears bleed. But when the limits of medicine result in permanent vision loss the conversation often comes to a halt. We might place a hand on the shoulder and gently explain that there are no additional treatment options and follow with something like “I’m sorry, there is nothing else we can do.” Unfortunately, we spend a surprisingly little amount of time discussing what is it like to live with vision loss, much less what rehabilitation options are available to help our patients to continue to live active and vibrant lives.
Age-related Macular Degeneration (AMD) is one of the leading causes of permanent visual impairment in the United States. Macular degeneration is an age-related condition resulting in disruption of the central vision (in a part of the eye called the macula). Despite the name, macular degeneration does not “degenerate” or deteriorate in most cases. Most people diagnosed with AMD will develop a mild form that does not progress to advanced macular degeneration. For those with mild AMD, they may experience symptoms such as: difficulty seeing small print, poor vision in various lighting conditions, difficulty with glare, unable to keep their place when reading, seeing street signs, or seeing the print on the TV. Some patients with AMD develop an advanced stage of the disease and symptoms may progress to include: difficulty in reading any print/text, seeing medications, reading signs, seeing TV, recognizing faces, difficulty with depth perception, and difficulty with performing daily activities (shaving, cooking, shopping etc.).
While great advancements were made in the 2000’s in the treatment of AMD, only approximately 10% of those diagnosed with AMD currently benefit from the therapy. The other 90%, unfortunately, are still waiting for that breakthrough treatment to prevent vision loss. Given the limitations of glasses and medical interventions in the management of AMD, many individuals with vision loss begin to pull away from many of their daily and social activities. Not surprisingly, the association between mental health conditions such as depression and anxiety and vision loss from AMD is well documented.
So, when medical treatment options fail, what can be done for those with vision loss from AMD? Low vision rehabilitation programs are designed to help individuals with vision loss access tools and training to help them to continue to lead active and engaged lives. Low vision rehabilitation programs do not “fix” the vision loss from AMD, but rather develop individual rehabilitation plans that are focused on helping the patient successfully function in their day to day with vision loss. These programs typically provide collaborative care between a low vision trained Optometrist and other vision impairment services such as: low vision therapy, skills of daily living, accessible technology training (computers, smart speakers, smartphones…), orientation and mobility to reduce fall risk, recreational therapy, occupational therapy, vocational therapy and mental health and counseling. This type of comprehensive rehabilitation has been associated with improved scores in activities of daily living, independence, mental well-being, and overall quality of life for patients with vision loss from AMD.
The conversation between an eye doctor and their patient when discussing vision loss from AMD, while still difficult, should not be without hope. There are many organizations that partner with vision rehabilitation specialists that can help patients with AMD access their resources. For veterans, the Department of Veterans Affairs (VA) established the first blind rehabilitation center for adults in 1948 at the Hines Veterans Hospital in Chicago. Since that time, the VA has continued providing veterans with access to all forms of low vision rehabilitation from basic outpatient programs to advanced blind rehabilitation centers throughout the country as part of their VA benefits. Outside the VA, low vision programs exist in a variety of settings, and accessing resources in your community should begin with a conversation with your eye care provider fora referral.
“LET YOUR FOOD BE YOUR MEDICINE, AND YOUR MEDICINE BE YOUR FOOD.”
The famous anthropologist Margaret Mead (1901-1978) is credited with the quote “It’s easier to change a man’s religion than to change his diet”. Thanks to recent scientific data that is emerging of the profound power of nutrition and lifestyle choices to change the course of disease, as a practitioner on the frontlines caring for patients with macular degeneration I respectfully disagree with Margaret Mead. The evidence that Hippocrates (who lived over 2000 years ago) was right about food as medicine is so strong now that I believe any patient that understands the power of nutrition to influence health will hopefully be willing to change. When I prescribe evidence-based nutrition and lifestyle interventions to my patients, I always give them a “WHY”. As the philosopher Friedrich Nietzsche once famously said, “He who has a why to live can bear almost any how”, this article provides a “WHY” researchers so strongly recommend dietary changes to mitigate the course of chronic diseases like macular degeneration, cardiac disease, diabetes, dementia, cancer, etc. In giving you a “WHY”, as a clinician who is passionate about preserving sight, my hope is to prove Margaret Mead wrong…
The National Institutes of Health and the National Eye Institute changed the course of macular degeneration management with their Age-Related Eye Disease Study (AREDS and AREDS2). These trials that began in 1992 and spanned over 20 years found that a combination of vitamin C, vitamin E, lutein, zeaxanthin, zinc, and copper significantly decrease the risk of developing late-stage macular degeneration in patients already showing signs of macular degeneration. More recently, a 10-year post-hoc analysis of the data from the AREDS and AREDS2 trials showed us that overall patterns of eating such as a Mediterranean diet can further reduce the risk of developing late-stage macular degeneration. This makes perfect sense as a single nutrient or food approach is not able to reach the synergistic effects of food and nutrients combined in the diet. The results are impressive. In fact, if the benefits of a Mediterranean diet could be put into a pill, we all would be taking it. Here is what emerged from the latest AREDS and AREDS2 post hoc analysis:
- High adherence to a Mediterranean diet can reduce the progression to late-stage macular degeneration, including the severe dry form, by 25-40%.
- A diet high in fatty fish can reduce the chances of developing late-stage macular degeneration between 31-65% (31% for the general AMD population and 65% for AMD patients with protective genes.)
- Eating a Mediterranean diet, particularly a lot of fish, is beneficial for those patients with early AMD as well.
- The Mediterranean diet was also associated with a reduced risk of cognitive impairment.
The Mediterranean diet consists of nine components including increased consumption of fruits, vegetables, beans, nuts, whole grains, fatty fish, olive oil, with a low consumption of red meat and dairy. While the abundant vegetables and fruits in the Mediterranean diet are important, most significant in its effect on AMD is consuming two servings of fatty fish a week. Examples of fatty fish include the following: salmon, herring, sablefish, sardines, anchovies, fish roe, trout, Atlantic mackerel, sprats, stripped bass, eel, etc. Swordfish and tuna are also oily fish, however, many nutrition experts advise against the high consumption of these two types of fish due to higher mercury content. Adopting a Mediterranean diet as a means of preventing the onset of macular degeneration before the signs appear on examination is also strongly supported in scientific literature.
Eye health is strongly correlated with heart and brain health. Research has consistently shown that the Mediterranean diet is also effective in reducing the risk of cardiovascular disease and overall mortality by as much as 30%. The PREDIMED study, a primary prevention trial including thousands of people with diabetes or other risk factors for heart disease found that a Mediterranean diet supplemented with extra-virgin olive oil or nuts without any fat or calorie restrictions reduced the rates of death from stroke by roughly 30%. In the Nurses’ Health Study which followed 10,670 women ages 57-61, women who followed a Mediterranean-type eating pattern were 46% more likely to age healthfully which was defined as living to 70 years or more and having no chronic diseases such as diabetes, cancer, heart disease, or cognitive impairment. Studies now also show us that a Mediterranean diet is associated with healthy brain aging as well.
Food is powerful. Our forks are mighty weapons in disease prevention and outcome. Nutrition research is exploding and we are learning that Hippocrates truly was right when he said, “Let your food be your medicine, and your medicine be your food.”
Julie Poteet, OD, MS, CNS, FOWNS
Advances in Dry Age-Related Macular Degeneration
David Eichenbaum, MD – 02 December 2023
There have been remarkable advancements in the ability to treat neovascular, or wet, macular degeneration over the past 15 years. Since the advent of eye injections for wet AMD we have truly changed the course of this blinding disease and saved sight in millions of elderly patients.
Regretfully, the same advances have not been achieved in atrophic, or dry, macular degeneration. Although dry macular degeneration advances at a slower pace than wet macular degeneration, its advanced form, termed geographic atrophy, is a relentlessly progressive disease and leads to irreversible central vision loss.
In 2023, clinical research and collaboration between medicine and industry yielded approval of the first two commercially available eye injections for advanced dry age-related macular degeneration. These drugs, pegacetacoplan (Syfovre, Apellis) and avancincaptad pegol (Izervay, Iveric Bio), are a major advancement for patients and for ophthalmology. These injections make advanced dry age-related macular degeneration a treatable disease.
It is important to understand the benefits, limitations, and risks of all new drugs. Both injections work by modifying a primitive inflammatory pathway called the complement system. They both slow down the growth of atrophy, but do not stop it. Although patients continue to lose vision even on treatment, there is data suggesting that some function may be preserved over 2-3 years of continued use. There is a very small risk of infection or severe inflammation with these drugs, and both increase the risk of converting the wet AMD.
More efficacious and longer-lasting treatments for dry macular degeneration are in development. Regardless, the availability of pegcetacoplan and avacincaptad pegol has opened the door on a new era of treatment, and I have been eager to discuss these options with my patients. We are working hard as a field to treat all forms of macular degeneration as completely as possible.
AMD: THE HORIZON AHEADAMD: AHEAD
By: Jeffrey Gerson, OD, FAAO
Medical Director for the Macular Degeneration Association
If we were to read an article similar to this 20 years ago, it would not offer much hope to any patients with AMD. There simply wasn’t much that we know could be done in the realm of prevention or treatment. Twenty years ago, the AREDS1 study was still fresh and was state of the art in AMD care.
How things have changed. We have advanced from AREDS1 to AREDS2 to know the science proven best supplement for a certain stage of age-related macular degeneration. This is the standard for those with intermediate dry AMD, and this is something that is widely known throughout the eyecare community and patient community alike. This may not sound like much of an advancement, but it is for a few reasons. One is that we know from decades of research how to supplement macular degeneration. We have further learned of the potential benefit of supplements and dietary changes at all stages of AMD. It is never too early to think about nutrition. There have been scores of studies showing the benefits of lutein and zeaxanthin intake.
There have been monumental strides made in geographic atrophy over the last 12 months with 2 FDA approvals for treatment. GA has long been in the background, due to no treatment available, but now is in the forefront with multiple options, and likely more to come in the future. Twenty years ago, there was little to be done about wet macular degeneration. This is an area where there have been incredible advances, with the promises of even more to come. The medications used today are a marvel compared to the laser procedures of “yesterday”. Treatments in the past were hopeful to prevent dramatic loss of vision. Today’s treatments are done with the hope maintaining vision and in many cases improvement.
Many of the changes we look forward to are treatments that are less burden on patients, in other words, make it easier to get treated. What if treatments for wet AMD only needed to be administered a few times a year? What if there was a treatment for dry AMD to either improve the condition or even further reduce the risk of converting to wet AMD? What if there were genetics-based treatments to reprogram a patient’s cells to become healthy or not degrade any further than where they are? Just a few short years ago, these suggestions would have all seemed farfetched, and more like science fiction than modern medicine.
Lastly, and not to be forgotten are strides in low vision care. Even if somebody has compromises to their vision from macular degeneration, there are more options than ever before to help use remaining vision and continue to perform activities of daily living.
The message or take away here should be one of hope and optimism. Options are better today than ever before, and will continue to improve in ways that we can’t yet even imagine!
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Association between Age-Related Macular Degeneration & Ocular Surface Disease/Dry Eye
Sean P. Mulqueeny, O.D.
Macular Degeneration Association Newsletter – February 2024
I’m often asked the question; does my dry macular disease cause my dry eye? Dry Age-Related Macular Degeneration (AMD) is the breakdown of the macular structure without the presence of blood or fluid and it’s for this reason that this form of AMD is considered dry. The breakdown of the macula in AMD is due to many factors; genetics, smoking, sun exposure, cardiovascular disease and obesity, amongst others.
Dry eye is also called ocular surface disease (OSD) and involves inflammation affecting the front of the eye; the part of the eye that is exposed to the elements. Anatomically, the ocular surface is nowhere near the macula. In fact, it is located at the exact opposite side (or pole) of the eye from the macula. As such, the disease process of AMD has no direct effect on the development of dry eye. However, AMD may have an indirect effect on the ocular surface and dry eye.
Patients with mild to moderate dry AMD are capable of performing most of their daily visual tasks. However, they may struggle more with these tasks than they had before the onset of their macular disease. It takes more effort to see. This decrease in functional vision can lead to eyestrain, creating the need to consciously work harder to see what had been easily seen in the past.
Dry AMD and dry eye have some similarities, including that the prevalence of both conditions increase with age. AMD is the leading cause of sight loss in Americans 50 years old and older. It has been estimated that nearly 20 million people in the United States have some form of AMD. Dry eye is found in over 35 million people nationwide and is especially problematic in post-menopausal women. Sight loss from AMD is also more common in women. There are differences however. AMD is generally more prevalent in older populations, while dry eye can be found in all ages and demographic groups;
including younger patients, due in part to digital device use.
We blink our eyes upwards of 14,000 times a day. Blinking is a very efficient and effective method to spread tears across our eyes. However, in patients with macular degeneration, the inherent blur experienced from the disease forces patients to concentrate more intently to see. This increased level of concentration causes our blink rate to decrease. In fact, studies have shown that our blink rate may decrease by as much as one third when straining to focus our eyes. This equates to a loss of as many as 4,000 moisturizing blinks per day. We know that this decreased rate of blinking causes our tear film to evaporate at a much more accelerated rate and results in blurred vision and eyestrain. This scenario sets up a cycle of eyestrain; blur from the AMD leads to disruption of the tears which unfortunately, leads to more blur and further eyestrain.
Age-Related Macular Degeneration: what should every American know about
By: Mohammad Rafieetary, OD, FAAO, FORS
Age-related macular degeneration or AMD, and often referred to as macular degeneration is a common eye disease in the U.S. and worldwide. In 2019 the Center for Disease Control and Prevention (CDC) estimated more than 19.8 million American have some stage of AMD. Moreover, approximately 1.5 million of individuals with AMD have a “vision threatening” form of AMD. There are several known risk factors for development and progression of AMD, of these the most significant are aging, genetics, smoking and poor dietary habits. There is not a significant difference in incidence of AMD between men and women, however in the U.S. AMD is more prevalent in Caucasians. The possibility of one being diagnosed with AMD increases with age. According to the CDC there is 2% chances for those between the ages 40 to 44 to 46.6% among those aged ≥85. This is true of other eye conditions such as glaucoma and cataracts which reflects the importance of at regular annual eye examinations.
AMD is a degenerative disease of the retina. The retina is the light-sensitive layer of tissue at the back of the eye. AMD primarily effect the central portion of the retina called the macula, a small area only two tenths of an inch across, which is responsible for our central detailed vision. Damage to the macula results in inability to recognize what lies directly in front of us, resulting in difficulty in performing tasks such as reading or driving.
The symptoms of AMD depend on the staging or the severity of the disease. Early on people with AMD may find difficultly in seeing things in dim illumination as well as loss of contrast sensitivity. Contrast sensitivity is the ability to distinguish sharp and clear outlines of very small objects or the ability to identify miniscule differences in the shades of color or patterns. As the disease progresses, one may experience difficulty reading, watching television, recognizing faces including themselves in a mirror, and driving. This can result in loss of one’s independence and an inability to perform activities of daily living, and subsequently have social and psychological consequences. Difficulty interacting with others, and depression are often reported by patients with advanced stages of AMD.
AMD is detected by a thorough eye examination. The eyecare provider, can examine the retina directly and use other diagnostic instruments and techniques to detect this and many other eye conditions.
One of the components of an eye examination is checking the patient’s vision, also known as the visual acuity (VA). This is when one is told their vision is twenty over another number such a twenty or 20/20. What this means is that one can detect an object made to be seen at 20 feet is seen at 20 feet. Another word if a person’s vision is 20/50 means the person must come to 20 feet to see an object that a normal eye should detect at 50 feet. The VA is a functional vision test and can be affected by many situations and conditions. Loss of VA may be due to need of prescription eyeglasses, having dry eyes, cataracts, and AMD. Although VA is a functional test, it does not measure the “visual function”. What this means, VA testing does not account for contrast sensitivity, color vision, the ability to see in dim illumination, reading speed and many other aspects of our visual world. Patients often are interested to know their VA level and it is important to obtain this information during the examination and inform the patient. However, a patient suffering with advancing AMD may continue to have normal or near normal VA. The public should know that it is a combination of knowing their possible symptoms, and eye examination that includes, various functional and structural components, and ancillary procedures that may include genetic testing that would result in more precise diagnosis and an action plan to proceed in either monitoring or treating AMD.
Finally, as we know living a healthy lifestyle including avoidance of tobacco products, having a healthy diet and an exercise routine are important in all aspects of one’s health, this also applies to AMD.
Lessons from my AMD journey
By: Carolyn Fitzsimons, Olathe, Kansas
“That’s it! This is what I see out of my bad eye!” I exclaimed to my spouse. We were watching an NFL football game, and the TV field camera lens began to collect raindrops. The lens would vacillate between focusing on the drops and what was happening on the field. It’s hard to explain what my eyes see to others. While I have tried to find words to accurately for my distortion to others understanding, this was the closest I’ve ever come to accurately capturing my AMD impairment.
Approximately 8 years ago, I first heard the devastating words, “You have macular degeneration.” How do you hear that diagnosis and not feel panic, right? While those words were terrifying, I suppose there was comfort to be had back then since my AMD was described as the dry form, or the “good” kind. Then, things changed. Within two years, my AMD went from dry to wet, and I began eye injection treatments. These injections are full of pressure and require healing throughout the rest of that day. I’m forced to rest my eyes that night in the dark even though I might miss family activities or things I enjoy. There is a level of fear and anticipation every single shot day, even though I’ve done it many times now.
Two months ago, I was diagnosed with Geographic Atrophy in what I considered my “good” eye with 20/25 vision currently. I didn’t know what that even meant until a Google search when I got home. What a lottery to win but here we are! I’m awaiting on my retina specialist to advise as to the appropriateness of specialized injections for this new diagnosis. Once again, a new level of anxiety and panic arises.
Despite the curveballs that come with AMD/GA, here are some lessons I’m learning in this unwanted journey.
- I don’t have to face this journey alone. I findsupport through this organization, Macular Degeneration Association, www.MacularHope.org.In addition, other helpful online Facebook groups for those living with macular degeneration provide support. Hearing stories and experiences from others helps this diagnosis seem much less scary. Suggestions for low-vision tools such as amber sunglasses, night driving glasses and magnifying aid are helpful benefits I receive from these resources. There’s also an avenue to laugh at ourselves when our vision challenges create some pretty funny stories that only those with AMD/GA can truly appreciate!
- Monitoring matters! I was fortunate my optometrist recommended an early warning monitoring system following my initial diagnosis. The Foresee Home AMD Monitoring Program quickly identified my changing eye conditions for faster intervention treatment. I’m told a new monitoring system that will identify when I need an injection is coming—that will be amazing!
- I am responsible for being my own advocate. This includes educating myself on AMD/GA treatment options, expecting treatment professionals to answer my questions and staying informed of current AMD research. Advocacy means it’s ok to ask for an additional eye rinse after my injections so it doesn’t burn hours later! Lesson learned!
These are just a few lessons I’ve gleaned along my AMD journey. Macular degeneration may or may not rob me of all vision. I realize this. However, while I still have my “freak-out” moments, I choose to claim hope and optimism for the future. I’m so grateful for my medical team, family and online friends who share the journey, guiding and assisting with the challenges while celebrating small victories over obstacles.
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for discretionary use in carrying out its aims and purposes, (the sum of $_____) or ( a sum equal to _______% of
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