Losing Sight, Finding Hope: Living with Macular Degeneration
The new documentary, Losing Sight, Finding Hope: Living with Macular Degeneration, from The American Macular Degeneration Foundation, and created by filmmaker Nick Czerula, premieres on YouTube on:
Monday, March 20, 2023 at 8PM EST
View the teaser below:
How to Watch
The full documentary, Losing Sight, Finding Hope: Living with Macular Degeneration, can be watched in the viewer below, or on YouTube at https://youtu.be/XSApwfhJJPg, during the premiere on March 20th, at 8PM EST. (The viewer below will not play UNTIL that date and time.)
Can’t Make the Premiere?
Don’t worry! AFTER the premiere, the film will be available to watch anytime at the same link, or in the viewer below.
What to Know About YouTube Premiere Viewing
YouTube offers a “premiere” feature that allows us to release a video on a particular date and time, and for viewers from across the country to watch the premiere at the same time.
In terms of actual viewing, it’s not much different from watching any other video on YouTube, but there are a few things to know.
The film will auto-play on YouTube at the set time and date (March 20, 8PM EST) – as long as you’re on the premiere page at https://youtu.be/XSApwfhJJPg, the video will automatically start playing at 8PM EST on March 20th.
There will be a one-minute countdown – YouTube automatically inserts a countdown that will start at 8PM and run for one-minute. This gives you a moment to settle in for viewing. This is not part of the film, just a YouTube feature that only happens during the premiere viewing.
You can pause, and even rewind, but not fast-forward – During the premiere viewing time, you can pause or rewind if you missed something, but you will not be able to fast-forward past the point of play that is current. For example, if the film has been running for 20 minutes, and you want to go back to the 15 minute mark, you can do that, but you wouldn’t be able to fast-forward past the 20-minute mark. Keep in mind that if you DO pause or rewind, you will be out-of-sync with other viewers. This only really matters if you are participating in the optional chat (more below on the chat feature).
Once the premiere ends the video is available to view anytime at the same link – Once the film has played in full, the premiere is “over” and the video will behave like any other YouTube video from then on. You will be able to watch it anytime you like, even if you didn’t view during the premiere.
You have the option to chat with us and other viewers during the premiere.
If you watch during the premiere time on YouTube, there will be a chat box available to the right of the viewer window where you can chat with other viewers, and some special guests from AMDF and the film. THIS IS OPTIONAL. Keep in mind, if we have a lot of viewers, the chat can get very crowded and fast-moving, and the chat font size is small (a YouTube feature we can’t customize).
If you DO want to participate in the chat, you will need to be logged into YouTube. If you have a gmail account, you can log in with that. Otherwise, you may need to create a new account.
The chat is only available just before and then during the premiere film viewing time. Once the film ends, the chat is automatically ended by YouTube.
The good news is that there are other options to leave comments or ask questions if you can’t make the premiere, don’t have a Gmail or YouTube account, or would rather focus on the film while it’s playing and comment after. You can:
Leave a comment here on this blog post. Just scroll to the end and leave your comment.
Leave a comment on YouTube below the viewer window. You’ll need to be logged into YouTube to leave a comment there. If you have a gmail address, you can use that to log in. Otherwise, you may need to create a new account.
This powerful, 48-minute documentary features people living with vision loss from macular degeneration, and special expert guests.
From macular degeneration diagnosis, to losing sight, to new ways of living and hope for the future – five patients share their stories, their vulnerabilities, and the wisdom they’ve gained through their personal journeys living with vision loss from macular degeneration.
Expert guests shed light on what we know about macular degeneration, and provide hope for what’s available to patients now, as well as what’s coming in the future.
Presented by The American Macular Degeneration Foundation
A groundbreaking, new frontier in macular degeneration treatment has been announced!
With the FDA’s approval of Syfovre™, for the first time there’s hope to preserve sight for millions of patients with the advanced stage of dry macular degeneration (dry AMD), called geographic atrophy (GA).
“This is extraordinary news,” said Chip Goehring, Founder and President of AMDF, “and offers hope, not only to geographic atrophy patients, but to the macular degeneration community as a whole, that advances in our understanding of all stages of this disease can lead to treatments.”
“The approval of SYFOVRE is the most important event in retinal ophthalmology in more than a decade,” said Eleonora Lad, M.D., Ph.D., lead investigator for the OAKS study, director of ophthalmology clinical research, associate professor of ophthalmology, Duke University Medical Center. “Until now, there have been no approved therapies to offer people living with GA as their vision relentlessly declined. With SYFOVRE, we finally have a safe and effective GA treatment for this devastating disease, with increasing effects over time.”
“GA is a complex disease that the field has spent decades trying to address, so we are humbled and proud to bring forward the first-ever treatment,” said Cedric Francois, M.D., Ph.D., co-founder and chief executive officer, Apellis.
What Does Syfovre™ Treat?
Syfovre™ is currently approved for the treatment of geographic atrophy, an advanced stage of dry macular degeneration.
Dry macular degeneration is the most common form of age-related macular degeneration comprising about 80-90% of AMD patients, and usually develops slowly. For some patients, dry macular degeneration can turn into geographic atrophy, which is characterized by lesions that continue to grow in size and eventually cause dead zones in central vision.
Geographic Atrophy can damage central vision in as little as 30 months.
The term geographic atrophy may be new even to those with macular degeneration because, until now, there was no treatment and little discussion between doctors and patients.
To date, the only AMD treatment available has been for the neovascular, or wet, form of AMD. In the wet form (affecting 10 – 20% of AMD patients), leaky blood vessels cause sudden central vision loss — a process that can be halted with regular injections of anti-VEGF drugs into the eye.
How Does Syfovre™ Work?
Syfovre™ is administered by injection into the eye, and works by targeting a protein in the complement pathway.
In clinical trials, Syfovre™ was shown to reduce the rate of geographic atrophy lesion growth by up to 36% with monthly injection.
Dosing is set at about every 25 to 60 days, according to Apellis, the drug’s manufacturer, depending on the individual’s response.
Syfovre™ is currently not a treatment for early AMD, and does not completely halt disease progression like anti-VEGFs do for wet AMD.
Syfovre™ continues to improve in its ability to slow the growth of sight-stealing lesions and is most effective at 18-24 months.
This is a new frontier in macular degeneration treatment. Since patients can have either dry AMD or wet AMD — or both — in either or both eyes, and because Syfovre™ cannot be administered at the same time as anti-VEGFs, new treatment regimens will have to be worked out between retina specialists and patients.
How to Get This New Geographic Atrophy Treatment
Syfovre is expected to be available by the beginning of March through select specialty distributors and specialty pharmacies nationwide. If you have geographic atrophy, or suspect you might, contact your eye care specialist to ask about Syfovre™.
As part of AMD Awareness Month 2023, The American Macular Degeneration Foundation announces the premiere of:
Life with Macular Degeneration Patient Stories Mary Toss: The Perseveranceof Spirit
About the Film
In this honest, short documentary, Mary Toss shares her personal story of living with macular degeneration. She reflects on the reality of vision loss and grief, and the film reveals the eventual potential for the triumph of spirit.
Through interviews with Mary and conversations with friends and family, we get an intimate view into Mary’s daily life. From the tricks she’s discovered to adjust to vision loss, to the people who make up her support network, we see Mary persevering, with acceptance, and humor, to live independently with dignity.
AMD Awareness Month 2023
AMD Awareness Month is a nationally recognized awareness month dedicated to raising awareness about the disease of age-related macular degeneration. You can learn more about age-related macular degeneration at What is Macular Degeneration.
You can help! Help us reach more people by sharing this article with your network, and if you’re on Facebook, follow us there and amplify the reach of awareness content by liking, sharing and commenting.
Since the publishing of these guidelines in March of 2020, information has come to light regarding AMD patients’ risk of more severe illness if they contract COVID-19. Please continue to follow the guidelines below in regards to your eye care, follow the CDC recommended protocols to reduce your risk of infection, and read more about the research that indicates more severe COVID-19 complications for patients with AMD here: Study Indicates AMD Patients are at Higher Risk of COVID-19 Complications
Do You Have to Choose Between Your Health and Your Vision?
At AMDF we have been thinking a lot about how many of you in the AMD community may be concerned about being more at-risk from COVID-19 as described by the CDC (Centers for Disease Control) and how both fears and reality may affect your decisions about maintaining your AMD care.
To address concerns regarding macular degeneration care during the COVID-19 outbreak, we consulted with the American Academy of Ophthalmology (AAO), Dr. Johanna M. Seddon, ScM, Professor of Ophthalmology at University of Massachusetts Medical School andDirector of the UMass Macular Degeneration Center of Excellence, and Dr. Rahul N. Khurana, Retina Vitreous Associates of Northern California.
What you might expect at the clinic
AMD clinics are taking precautions to insure the health and safety of patients by reducing the potential for virus transmission and enforcing social distancing. Though each office will have their own variations on protocols, the general guidelines they are following are:
Rescheduling routine patient visits
Postponing elective surgeries
Asking patients over the age of 60 without urgent ocular problems to stay home
Having patients wash their hands immediately upon arrival
Decreasing the number of patients in the waiting room
Regularly disinfecting surfaces
Having staff members wear masks and gloves
Having doctors and nurses wear ocular and oral shields to prevent virus transmission during close examinations
Informing patients that the ophthalmologist will speak as little as possible during parts of the examination, and requesting that the patient also refrain from talking in these moments.
Additional precautions being taken at clinics:
Telling patients with cold, flu, and allergy symptoms to stay at home
Positioning a sentry at the door to screen entering patients
Screening patients with questions about fever, cough, travel history, and the travel history of family members
Asking that patients wear a surgical mask if they have any sign or symptom of respiratory disease
Rescheduling the visits of those who are sick, have a cough or fever, have been exposed to COVID-19, or have recently traveled outside the United States
Referring patients and staff members with a temperature above 99.5º to their primary care providers
Limiting patients to only one visitor accompanying them (other friends or family must wait in the car)
Asking anyone accompanying a patient to remain outside the building, where they will be contacted by text message when the patient departs
Positioning chairs in the waiting room 6 feet apart from each other
Removing magazines and beverage areas from the waiting room
What you can do to maintain your vision health during these difficult times
For patients with early, dry AMD: postpone non-urgent doctor visits, maintain home monitoring and continue making healthy lifestyle choices.
“Patient – physician conversations are the most important element of establishing a patient’s course of action under today’s circumstances,” says Dr. Khurana, “Any change in your vision should be reported to your eye care specialist.”
If your doctor has advised supplements with lutein and zeaxanthin, continue with those, as well as an eye-healthy diet (which is also good for your heart and general health). However, if you are taking a supplement for AMD that contains zinc (which is included in the recommended AREDS and AREDS2 formulas), Dr. Seddon advises that taking additional zinc lozenges for cold or flu prevention may lead to zinc toxicity. Check with your doctor, as your AMD supplement may already supply all the zinc you need to maintain your immune system.
Q:I have dry AMD that has, so far, been relatively stable. I have an upcoming eye appointment to monitor my condition. Should I keep or postpone the appointment?
A:As of 3/19/2020 the AAO is advising ophthalmologists to only see patients with urgent or emergent care needs. From their statement: “Due to the COVID-19 pandemic, the American Academy of Ophthalmology now finds it essential that all ophthalmologists cease providing any treatment other than urgent or emergent care immediately.“
If you qualify as at-risk for COVID-19 complications and you haven’t detected any changes in your vision, check in with your eye care specialist. It is likely your appointment will be postponed.
Q:I have dry AMD and have noticed a sudden change in my vision. I’m also at high risk from complications due to COVID-19. Should I see my eye doctor now?
A:In this case, call your eye doctor to discuss your vision changes over the phone to determine if there is any sort of vision emergency. You and your doctor will have to weigh how urgent it is for you to be seen in office. You may need to be seen by a designated doctor on call for urgent care.
Q:I spoke with my eye doctor and they feel it’s important to be seen in office to determine the cause of my sudden change in vision. I’m still worried that doing so could expose me to COVID-19 and I’m at high-risk. What should I do?
A:Most offices are taking extreme precautions and few people are in one room together, since non-essential appointments are being canceled.If your doctor feels it’s important for you to be seen in office, it’s reasonable for you to ask what precautions they are taking to reduce the risk of COVID-19 exposure and spread. .
“Don’t assume that a clinic is closed due to the coronavirus pandemic,” says Dr. Khurana. “Check with your doctor. Some areas are harder hit by the virus than others, but most offices are still open and trying to see patients in the safest manner. Guidelines for AMD clinics have been established, and each clinic has established their own version of these protocols, so please do not become concerned if circumstances at the clinic differ a little from those you have heard or read about.”
You can also ask if they have a private area to wait in rather than a crowded waiting room, or perhaps that they offer an appointment time when they know there will be low traffic. If you are extremely concerned about maintaining proper social distancing, you might also request that they contact you by cell phone as you wait in your car for your appointment. In this scenario you’d have to let them know that you have arrived and that you are waiting nearby.
Not every office may be able to accommodate special requests.
Q:I have wet AMD and receive monthly eye injections. I’m also in a high-risk group for COVID-19. I feel I’m having to decide between my vision and my health/life. What should I do?
A: This is a tough decision. Studies confirm that maintaining a regular schedule of eye injections is important in retaining the vision you have, and missing even one appointment can have a negative effect.
Remember that clinics are making special accommodations for high risk patients, as described above. Call ahead of your appointment to make sure that these are in place.
According to Dr. Khurana, “Seniors should not sacrifice their sight to fear. Anti-VEGF injections are essential for those who require them, and should not be skipped – even in a shelter-in-place scenario. If you must come in for essential care, take appropriate precautions like handwashing and social distancing, and come in.”
That said, there’s no question that your health and life are most important.
Call your retinal specialist’s office and request a phone appointment to discuss your options. Based on how long you’ve been receiving injections and how stable your vision is, your doctor may be comfortable with stretching the time between injections — but that is a determination that must be made by your doctor.
“The ophthalmic community considers our seniors and everyone in a high-risk group to be a valuable part of our society,” says Khurana. “We want to perform essential care to preserve your sight.”
Q:I’ve spoken with my doctor and feel the office is accommodating high risk patients safely. However, my transportation there feels risky (public transport, or a driver). What should I do?
A:Many people are suddenly working from home and may have more flexibility to give you a ride. If you have a friend, neighbor or family member who can drive you, and who you trust has been extra careful with their own exposure, this would be a better option than any type of public transport, ride-share, or public service transportation.
Ask that they wear a mask, and don’t be embarrassed or shy in asking about their exposure and what measures they’ve been taking to stay isolated.
If you must take public transportation, you can use anti-viral wipes to disinfect your seat and any grabs bars, and wear latex or similar gloves which you can also cleanse with hand sanitizer if you cannot access a washroom. Once at the clinic, you may be asked to dispose of the gloves and to wash your hands.
About The American Macular Degeneration Foundation (AMDF)
AMDF is a patient-centered foundation that supports potentially game-changing Age-related macular degeneration (AMD) research, education and advocacy in order to improve quality of life and treatment outcomes for all those affected by AMD (macular.org). Contact us at 413.268.7660 or 1-888-MACULAR (1-888-622-8527)
About the American Academy of Ophthalmology (AAO)
The American Academy of Ophthalmology is the world’s largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, AAO protects sight and empowers lives by setting the standards for ophthalmic education and advocating for patients and the public. AAO innovates to advance the ophthalmic profession and to ensure the delivery of the highest-quality eye care. For more information, visit aao.org.
About Dr. Seddon
Dr. Seddon is a world-renowned retina specialist and genetic epidemiologist, recognized for her groundbreaking research on lifestyle factors , nutrition and the associations of these modifiable factors with macular degeneration. The advice to eat green, leafy vegetables, increase lutein and zeaxanthin intake, and adhere to healthy habits like not smoking and getting exercise, evolved from her early work which has changed the management of macular degeneration. She and her team also discovered many of the known genes related to macular degeneration. As Director of the UMass Macular Degeneration Center of Excellence she oversees patient evaluation and treatment. In addition to being a research scientist, Dr. Seddon also sees patients at several locations in Massachusetts.She co-authored the American Macular Degeneration Foundation’s cookbook “Eat Right for Your Sight,” based on scientific studies of the impact of nutrition on eye disease.
About Dr. Khurana
In addition to seeing patients, Dr. Khurana is active with clinical research in developing new treatments for various retinal diseases. He has published over 100 peer reviewed scientific papers, been honored with numerous national awards and involved in over 90 clinical trials. Dr. Khurana is heavily involved with the American Academy of Ophthalmology and the American Society of Retinal Specialists where he serves on many committees. He currently serves as the Editor-in-Chief of the Ophthalmic News and Education (ONE) Network, which serves more than 100,000 eye physicians and surgeons around the world. Dr. Khurana was recognized by the American Medical Association as one of the top 51 emerging national leaders expected to make a strong impact on the future of medicine.
The American Macular Degeneration Foundation (AMDF), in partnership with Research to Prevent Blindness (RPB), has announced the recipients of the RPB/AMDF Catalyst Awards for Innovative Research Approaches for Age-Related Macular Degeneration, which provide seed money for high-risk/high-gain AMD research into both dry and wet forms of the disease. Each grantee will receive $300,000, payable across three years, pending a mid-point review.
Sabine Fuhrmann, PhD, Associate Professor, Vanderbilt University Medical Center, Nashville, Tennessee, will examine the potential of retinal pigment epithelium (RPE) cells to regenerate in mature mammalian eyes. RPE cells support the healthy functioning of photoreceptor cells, while their degeneration leads to progressive, chronic AMD. By identifying and using small molecule and other novel regulators, Dr. Fuhrmann’s lab hopes to stimulate a previously discovered, intrinsic, regenerative response.
Aparna Lakkaraju, PhD, Associate Professor, University of California, San Francisco, School of Medicine, will also be focused on the retinal pigment epithelium, studying RPE cell damage in early AMD using advanced microscopy to observe disease progression in living cells. While Dr. Lakkaraju’s goal is learning about the genetic mechanisms that initiate RPE decline, she will also evaluate therapies that can preserve the health of the RPE, using drugs that are either already approved for human use, or in clinical/preclinical development (an approach that can shorten the time to translate these findings to the clinic).
“AMDF is continuing to grow its vision research commitments,” said Chip Goehring, President, AMDF. “By supporting these accomplished researchers in pursuing potentially game-changing treatments for macular degeneration, we hope to accelerate the arrival of new, sight-saving breakthroughs. And, by combining our resources with the grant-making experience and expertise of Research to Prevent Blindness, we are sharply increasing our ability to advance the science.”
The Catalyst Awards support previously unfunded, innovative science conducted by highly qualified scientists, equipping them with flexible dollars that allow them to pursue new discoveries in the course of their investigations.
“We are thrilled to welcome the American Macular Degeneration Foundation into this funding collaboration,” said Brian F. Hofland, PhD, President, RPB. “The number of applications for the Catalyst Awards was up this year and AMDF’s participation allows us to double our capacity to fund important AMD research. The potential for these innovative projects is significant.”
The co-funding of these RPB/AMDF Catalyst Awards for Innovative Research Approaches in AMD is part of a broader program expansion by AMDF which began with the inaugural AMDF Prevention Award in 2017 (to Johanna Seddon, MD, ScM, University of Massachusetts Medical School, for her pioneering AMD epidemiological and genetic research); the first presentation in 2017 of the AMDF Breakthrough Award (to Neena Haider, PhD, Department of Ophthalmology, Harvard Medical School, for research focused on disease pathway interventions); and the AMDF Prevention Award in 2018 (to Kip Connor, PhD, Department of Ophthalmology, Harvard Medical School, for research focused on the interaction between the body’s innate defense systems, nutrition, environmental factors, genetic profile and modifiable lifestyle choices). In 2019, AMDF sponsored two Travel Grants for young researchers to attend the ARVO international vision research annual meeting, and is co-sponsoring a series of grants with Fight for Sight.
Research to Prevent Blindness (RPB) is the leading nonprofit organization supporting eye research directed at the prevention, treatment, or eradication of all diseases that damage and destroy sight. As part of this purview, RPB also supports efforts to grow and sustain a robust and diverse vision research community. Since it was founded in 1960 by Dr. Jules Stein, RPB has awarded more than $368 million in research grants to the most talented vision scientists at the nation’s leading medical schools. As a result, RPB has been associated with nearly every major breakthrough in the understanding and treatment of vision loss in the past 50 years. Learn more at www.rpbusa.org.
Through a growing portfolio of research grants and creative partnerships with other eye research funders, the American Macular Degeneration Foundation (AMDF) is finding ways to efficiently leverage its resources and accelerate the development of promising approaches to improve the lives of age-related macular degeneration (AMD) patients.
At AMDF, we have been hearing from researchers that the scientific community’s knowledge base about AMD has grown significantly, that technology is creating the possibilities for new assessment and drug delivery tools, and that the time is now to make a push and convert decades of discoveries into actual treatments.
As part of that push, the retooling of the AMDF Grants Program started in 2017 with the funding of Harvard’s Neena Haider, PhD, to pursue a “master switch” AMD gene therapy. This year, the Foundation granted its first AMDF Prevention Award to fellow Harvard investigator Kip Connor, PhD, in the amount of $150,000. The award is for Dr. Connor’s proposed study, “Aging and Immunity in Age-Related Macular Degeneration,” which seeks to unravel the connections between some of the body’s immune cells (called microglia), the body’s inflammatory response, and nutrition-derived treatments.
We are also developing partnerships in which the whole is greater than the sum of the parts. We laid the groundwork for some of these during conversations that began at gatherings of eye researchers and eye research-funding groups last year and earlier this year. With Research to Prevent Blindness (RPB), AMDF is funding two researchers who, starting in January 2019, will each receive an AMDF/RPB Catalyst Award for Innovative Research Approaches for Age-Related Macular Degeneration (“Catalyst Award”) at a rate of $300,000 across three years.
RPB is the preeminent, nonprofit funder of research directed at the prevention, treatment or eradication of all diseases that threaten vision. With this partnership, we are creating an incentive for the world’s leading AMD scientists. By aligning our resources with RPB, AMDF is more than doubling our capacity to foster life-changing breakthroughs.
“RPB’s grant-making expertise and broad awareness among the nation’s top vision researchers, when aligned with AMDF’s passionate commitment to those affected by AMD, creates the potential to generate remarkable discoveries,” adds Brian Hofland, PhD, President, RPB. “We are extremely pleased to be joining forces with AMDF in supporting this kind of high risk/high gain research.”
The proposed studies submitted for these Catalyst Awards cannot have been previously funded by any other source, ensuring that fresh ideas will come to light. Some of them may be transformative.
At the same time, we are also extending our partnership with Fight for Sight, a funder of young vision researchers. The new grants, which will be announced at next year’s Association for Research in Vision and Ophthalmology (ARVO) annual meeting, will provide resources for postdoctoral scholars to conduct investigations and travel to the international ARVO meeting to share concepts with potential mentors. This is a way to nurture the maturation of emerging scientists and maintain forward momentum through continuity.
“Ideas make a difference,” says Joan Miller, MD, Chair of the Department of Ophthalmology at Harvard, and Chief of Ophthalmology at Mass Eye and Ear and MGH. “They come from individual brains, and it is a huge enterprise to have these ideas and people come together toward solutions. Funding for this is critical, especially the early funding that comes from philanthropy and foundations to foster those ideas through academic research before they are more fully developed with federal funding and eventually tested and brought into production with the help of venture capital and pharmaceutical companies.”
This is precisely why AMDF recently provided financing for the 5th Biennial International Symposium on AMD, held at Harvard in October. The two-day event brought together more than 270 AMD researchers in a series of deep-dive, panel discussions to promote potential collaborations. Some of the world’s most established AMD scientists shared their knowledge with younger investigators and challenged them to consider additional areas of inquiry. AMDF had the opportunity to conduct interviews with AMD thought leaders, which will soon appear on the AMDF web site.
AMD is a complex disease, and its prevalence is approaching epidemic proportions. Already, there are 10,000 U.S. baby boomers turning 72 every single day and the risk of having AMD has reached 30 percent between the ages of 65 and 75. As a society, we have to acknowledge that this is a problem. At AMDF, we are taking a multi-faceted approach toward solving it.
The AMDF has been featured in the New York Times. Below is a reprint of the article.
By JANE E. BRODY
Dr. Sidney Schreiber, a cardiologist from Scarsdale, N.Y., was in his mid-70’s and still working in the lab and caring for patients when he noticed that he could not see clearly with his right eye.
A visit to his ophthalmologist produced a discouraging diagnosis. Dr. Schreiber had macular degeneration, a rapidly progressive form at that, and within three years he lost 90 percent of his vision, leaving him functionally blind.
An estimated 10 million Americans have this progressive retinal disease, though most are not as severely affected as Dr. Schreiber, and some are not yet aware that they have the painless condition. It afflicts one person in four older than 75 and is the leading cause of legal blindness in Americans over 55.
The numbers affected will continue to climb as the population ages, prompting an escalating race to develop more effective treatments and, perhaps, even preventives, including measures based on recently identified genetic factors that raise the risk of developing the disease.
A Familiar Regimen
Meanwhile, there is much that people can do now to ward off this disabling condition or slow its progress. Interestingly, the very same steps that lower the risk of high blood pressure, heart disease, diabetes and some cancers can also help protect the eyes.
Though peripheral vision remains intact, macular degeneration robs people of their central vision, making it hard or impossible to read, write, drive, watch television, see the time, recognize faces and see where they are going.
Still, many who are seriously afflicted manage to pursue active lives. The late Don Knotts, a co-star of “The Andy Griffith Show” and “Three’s Company,” was 57 when his disorder was diagnosed. But he continued to work almost until his death on Friday at age 81.
“I got pretty depressed for a while,” the American Macular Degeneration Foundation quotes him as saying. “And then one day I said to myself, ‘I bet a blind person would give his right arm to have the vision I have.’ “
Although most patients are over 55 when found to have what is commonly called age-related macular degeneration, some develop macular disease as children or young adults. Marla Runyan was in the fourth grade when she was struck with a juvenile form of the disease. Yet she finished college and competed twice in Olympic running events despite being legally blind.
Dr. Schreiber, the cardiologist, was an accomplished artist when macular degeneration forced him to abandon his hobby and his career. Like Mr. Knotts, he lapsed into a serious depression for nearly two years, emerging only after a visitor from Lighthouse International showed him all he could do with low-vision aids.
Encouraged by his wife, Freda, who became his eyes, he gradually resumed his favorite activities, with modifications. He visits museums (his wife reads the legends aloud), listens to recorded books (“I’ve never been so well-read”), gardens (though he sometimes pulls up flowers instead of weeds) and has resumed painting, his artistic talent apparently intact judging from a recent rendition of poppies in a vase.
He has even been able to put his medical training to good use. Now 84, he is scientific director of the American Macular Degeneration Foundation, which sponsors research and provides support and information. It also publishes a quarterly newsletter and has produced the helpful “Hope & Cope” DVD, both available for a $25 contribution. The foundation can be reached at P.O. Box 515, Northampton, Mass. 01061-0515 or at (888) 622-8527. Its Web site is www.macular.org.
The macula is a dense collection of light-sensitive cells in the middle of the retina along the back of the eye. These cells are used for the “straight-ahead” vision needed to read, sew, drive and see fine details. Most cases of macular degeneration begin and remain in one or both eyes as what is called the dry form of the disease. Yellow deposits called drusen form under the retina, increasing in number and size until they destroy macular cells and blur central vision.
The disorder can progress so slowly that deteriorating vision is not noticed until it is quite advanced. But as it worsens, more light may be needed to read and faces may become hard to recognize. Far less often, macular degeneration occurs as the wet form, leading to a rapid loss of central vision when abnormal blood vessels grow under the retina and leak blood and other fluids, raising the macula off the wall of the eye. In about 10 percent of cases, dry macular degeneration eventually develops into the wet form.
Looking for Early Signs
Dr. Schreiber said: “I might have had the dry form for 10 years, for all I know. It’s probably my fault for not seeing an eye doctor every year.”
Which raises a critical point. Early signs can be readily detected by a thorough eye exam in which the pupil is dilated, allowing the doctor to examine the retina and optic nerve for signs of trouble. People 50 and older should have such exams yearly, or twice a year with signs of disease.
A simple test can be done in any doctor’s office (or at home) to detect vision distortions that might not otherwise be noticed. It uses a graphic device called the Amsler Grid, a box of cross-hatched lines with a black dot in the center. Covering first one eye, then the other, a person stares at the black dot. If any of the straight lines appear wavy or missing, that could be a sign of macular degeneration.
Prevention and Treatment
The established risk factors offer strong clues to avoiding or delaying onset of the condition. They include smoking, obesity, high blood pressure, sedentary living, overexposure to sun and a diet deficient in green leafy vegetables and fish.
Other risk factors are being a woman, farsighted or Caucasian and having light eye or skin color, cataracts and a family history of the disorder. Two factors, oxidation and inflammation, appear to cause macular injury. Studies sponsored by the National Eye Institute found that daily consumption of a high-dose formula of antioxidants and zinc could reduce the risk that early macular degeneration would advance.
Various products sold over the counter contain this formula or one like it: 500 milligrams of vitamin C, 400 I.U. of vitamin E, 15 milligrams of beta carotene, 80 milligrams of zinc oxide and 2 milligrams of copper. Smokers should avoid products containing beta carotene, which may increase their risk of lung cancer.
In addition, most experts recommend a supplement of lutein, zeaxanthin or both, carotenoids found in dark green leafy vegetables like spinach and collards. Twinlab makes a supplement, Ocuguard Plus, that contains lutein.
Several drugs, Visudyne by QLT and Novartis and Macugen by Eyetech Pharmaceuticals and Pfizer, have also been shown to slow deterioration of eyesight in wet type macular degeneration. One Visudyne patient in six is said to have shown improved vision, a most exciting advance. Another drug awaiting approval, Lucentis by Genentech, may also help.
AMDF is a 501(c)(3) non-profit, publicly supported organization (Charity ID #04-3274007). Contributions are tax deductible to the extent allowed by law.