In fact, the research suggests that having AMD is a greater risk (25%) for severe COVID than Type 2 diabetes (21%) and obesity (13%).
Based on the evidence, the researchers suggest that lowering the activity of the PDGFB gene may form the basis of a treatment that lowers COVID infection severity. According to one of the study’s authors, there are already clinical trials underway for an improved wet AMD treatment that combines current anti-VEGF therapy with drugs that block PDGFB signaling.
While no advisory statements have been issued by medical groups, the AMDF believes that knowing that you have AMD, or that AMD runs in your family, should be taken into consideration when making decisions about risking exposure to COVID-19, and you may want to consult with your doctor about these findings to develop a treatment plan should you get COVID.
Chung J, Vig V, Sun X, Han X, O’Connor GT, Chen X, DeAngelis MM, Farrer LA, Subramanian ML. Genome-Wide Pleiotropy Study Identifies Association of PDGFB with Age-Related Macular Degeneration and COVID-19 Infection Outcomes. Journal of Clinical Medicine. 2023; 12(1):109. https://doi.org/10.3390/jcm12010109
In addition to some exciting new treatments now FDA-approved for the treatment of different stages of macular degeneration (published in the current issue of our print newsletter, In the Spotlight, several new treatment options for macular degeneration are on the horizon.
Emerging Approaches to AMD Treatments
The process of capturing light and transforming it into signals that the brain interprets as vision makes the retina the most bioactive tissue in the body, requiring huge amounts of energy, which is provided by mitochondria, the energy-producing organelles within cells. A new tool that improves mitochondria function may soon become available to slow the advance of AMD. Phase 3 clinical trials of a treatment known as photobiomodulation (PBM) have demonstrated sustained improvement in vision and a reduction in rates of new geographic atrophy in patients with intermediate dry AMD across two years. The non-invasive Valeda system (by Lumithera), already in use in Europe, exposes tissue to specific wavelengths of light, and reduces drusen development, slows the progression of geographic atrophy, possibly reduces conversion from dry to wet AMD, and may also slow the progression of Stargardt disease.
Scientists have found strong evidence that points to two disease processes in early AMD — with the potential to treat both. We already know that one of the earliest indications of AMD is the growth and spread of cholesterol-containing deposits behind the retina. The progression of one form of these deposits, called drusen, can be accelerated by eating a poor diet, high in carbs and saturated fats. The AREDS2 vitamin formula and the adoption of healthy dietary habits can slow their growth. But a second kind, called subretinal drusenoid deposits (SDDs), signal a greater risk for advanced AMD. Researchers believe SDDs are driven by a separate process — deficient blood flow to the eye, caused by vascular diseases — and that treating cardiovascular conditions may also treat SDDs. They further believe that AMD patients with observed SDDs should be warned that they may have undetected heart conditions.
Macular Degeneration Self Care Research
It’s possible that, later this year, wet AMD patients will have a new tool to help them better manage their disease. A home imaging device, called Notal Vision Home OCT, can take images rivaling those taken in an ophthalmologist’s office. Studies have shown that patients can set the device up and use it effectively to send images to the cloud, where a remote image analysis service can evaluate them — and their doctor can closely follow AMD progression, as well as the effects of treatment between office visits. In best case scenarios, patients who regularly use the device will be able to share critical structural changes in their retina, in real time, with their doctor, and reduce office visits by achieving the optimal time between treatments. Doctors, researchers and drug makers will also gain more detailed knowledge of how treatments and emerging drug delivery systems are working. The Home OCT has already been granted a Breakthrough Device designation by the FDA, along with reimbursement codes, in anticipation of its approval.
Gene Therapies for Macular Degeneration
In the next few years, therapies for AMD that use genetic material to cause the eye to make its own medicine may become available.
For wet AMD, RGX-314 (Regenxbio) and ADVM-022 (Adverum Biotechnologies) are in human trials and show promise. Both treatments instruct cells to make anti-VEGF proteins at therapeutic levels for up to three years. Whether these treatments represent one-and-done permanent solutions remains to be seen, but that is the goal.
For geographic atrophy (GA), a gene therapy called GT-005 (from Gyroscope, recently acquired by Novartis) has so far been found safe and effective in clinical trials. Rather than instructing the eye to manufacture a drug, GT-005 causes the eye to make more of a protein that the body normally releases to tamp down inflammation.
For Stargardts, sonpiretigene isteparvovec (Nanoscope Therapeutics) is the pharmaceutical name for a gene therapy for those with advanced vision loss from Stargardt disease,now in clinical trials. The emerging optogenetic therapy, which eventually may also apply to late dry AMD patients, adds genetic material that creates light sensitivity in bipolar cells for people who have lost most of their photoreceptors. Normally, bipolar cells are not light sensitive; their job is to convey visual information from the photoreceptors to the brain for processing into sight. Adding light sensitivity to these cells would not create full color vision, but would create the ability to perceive single-color versions of images.
In yet another use of gene therapy as a potential treatment for AMD, a Canadian research team has found that, by adding two, newly-identified genes, they can transform glial cells (which support the structure and metabolism of the entire retina) into cells that function as cone photoreceptors, which provide color vision and visual acuity. This approach represents an advance over stem cell transplantation by taking advantage of existing cells. The next step in refining this process will be the creation of fully functioning cone cells and the restoration of lost sight.
Stem Cell Therapy for Macular Degeneration
Whereas gene therapies seek to create new instructions to correct diseased pathways, stem cell therapies seek to create replacement parts.
Scientists at the National Eye Institute (NEI) have developed a potential tissue replacement treatment for GA. The first patient in a small clinical trial to determine the treatment’s safety has already received a patch of lab-grown, retinal pigmented epithelial (RPE) cells, surgically inserted under the retina, where their job is to replace diseased RPE cells and keep photoreceptors from dying. The patch itself is created by turning a patient’s blood cells into stem cells, then directing the stem cells to become RPE cells, and placing them on a biodegradable scaffold. Since the patch is grown from the patient’s own cells, there is no need to prevent the body from rejecting it by taking immunosuppressive drugs.
AMD Implant Options on the Horizon
Retinal prosthesis – There are promising reports coming from labs that are testing various aspects of a retinal prosthesis, under development by Pixium Vision, which is intended for patients with advanced dry AMD. The system combines a tiny chip that is surgically implanted behind the retina and wirelessly receives visual information from glasses containing a camera, connected to a pocket processor. In one study, patients were able to naturally integrate the central vision provided by the chip with their remaining peripheral vision, suggesting that the system could restore functional vision. In another study, implantation of the chip was found to cause only minor tissue changes following the minimally invasive surgery. Future versions of the system will provide greater acuity, which currently only allows very large letters to be read.
Implantable Miniature Telescope – A smaller version of the already FDA-approved Implantable Miniature Telescope (IMT) is entering clinical trials. Called the Smaller-Incision New-Generation IMT (SING IMT™, from Samsara Vision), this new design’s smaller size reduces surgical trauma, and it comes with its own delivery system, reducing errors in surgical implantation. The device is intended for people with late AMD, for whom other treatments have not worked, can only be implanted in one eye, and requires extensive vision rehab training.
New Drug treatments for Macular Degeneration Coming
FOR DRY AMD AND GEOGRAPHIC ATROPHY (GA)
Zimura (avacincaptad pegol), another eye-injection drug for the treatment of GA, has been given Breakthrough Therapy designation by the FDA, which will accelerate its development and regulatory review, creating the potential for it to become available to patients in the near future.
AVD-104 (Aviceda Therapeutics), an experimental, intravitreal injection drug for the treatment of geographic atrophy — that may also act like an anti-VEGF therapy in reducing new blood vessel growth — is entering phase 2 clinical trials.
Risuteganib and Elamipretide – Two investigational drugs for AMD that act by improving the function of mitochondria are in phase 2 clinical trials. Risuteganib (Luminate, Allegro Ophthalmics), delivered by intravitreal injection for intermediate dry AMD, restored significant functional vision for patients who had some vision loss, but not complete atrophy of the outer layers of the retina. Elamipretide (Stealth Biotherapeutics), injected into the skin of GA patients, has also shown a positive effect on visual function.
FOR NEOVASCULAR (WET) AMD
OPT-302 (Opthea) is a combo drug for wet AMD, but it operates in a different manner than other currently available anti-VEGF treatments, which block only one of three VEGF blood vessel growth promoters: VEGF A. Because blocking the activity of VEGF A may increase the activity of VEGF C and VEGF D (which also promote the growth of new blood vessels), OPT-302 combines an anti-VEGF A drug with additional anti-VEGF C and D “trappers” to improve the long term control of wet AMD.
D-45172.2 for Wet AMD – Early clinical trials are starting for a wet AMD treatment, D-4517.2 (Ashvattha Therapeutics). Patients would be able to inject the drug themselves, at home…and an oral form is also in development.
Axitinib – A new type of anti-VEGF drug — axitinib injectable suspension, CLS-AX (Clearside) — that is administered not into the center of the eye but into a space between the outer layers of the eyeball, has demonstrated the ability for patients to go 6 months and beyond between treatments in early clinical trials. The same drug, administered as a gel implant, OTX-TKI (Inlyta) that gets completely absorbed in the eye, is having similar success in early tests.
ALK-001 (Alkeus Pharmaceuticals) is an oral vitamin A replacement, currently in human trials, that safely provides vitamin A’s functions in Stargardt patients while slowing the growth of lesions.
LBS-008 (also called Tinlarebant, from Belite Bio) is another oral treatment for Stargardt disease that is in late clinical trials. It reduces toxic vitamin A byproducts by reducing the delivery of vitamin A. Since dry AMD also involves the accumulation of the same toxic vitamin A byproducts, the drug is also in testing as a dry AMD treatment.
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™.
In their words, “As a whole, these artists’ stories inspire a deeper respect for and understanding of the profound capacity of humans to remain creative and vital in the face of adversity and loss.”
Each film focuses on the history of each artist’s work, weaving in the vision loss from macular degeneration that impacts their work and how they’ve adapted.
Serge Hollerbach – A Russian Painter in New York
“I think partial loss of vision freed me from attention to detail.” – Serge Hollerbach
In this short, award-winning documentary, the Russian emigre painter Serge Hollerbach (Nov 1, 1923 – Feb 19, 2021) creates two paintings, separated in time by a period of four years during which he has visibly aged and his vision has declined. While painting, he discusses art, his displacement during World War II, building a new life in New York City, and how vision loss has affected his ability to paint.
Lennart Anderson – Seeing With Light
In Seeing with Light, the artist Lennart Anderson (August 22, 1928 – October 15, 2015) works on a portrait of his friend and fellow artist, Kyle Staver, as he discusses his life and work. Though he struggles to see her, he is determined to continue his life-long interest in portraiture. First released on Oct. 30, 2014, it was one of our first major projects at the Vision & Art Project.
It’s not until 8 minutes in that it becomes apparent Lennart is working with vision loss, as you see him position his eyes inches away from his canvas and tilt his head in order to see what he’s working on. This moment is a breathtaking illustration of the artist’s perseverance.
Robert Andrew Parker – A is for Artist
In A Is for Artist, the Connecticut-based artist and illustrator Robert Andrew Parker talks about the impossibility for him of a life without painting and how he ‘keeps on keeping on’ by embracing the inevitable changes that vision loss has brought to his work.
About the Vision & Art Project
The Vision & Art Project is an AMDF-supported project that chronicles the intersection between macular degeneration and the arts.
From the Vision & Art Project’s website: “Our mission at the Vision & Art Project is to give greater visibility to the overlooked influence of vision loss from macular degeneration on historical and contemporary artists. We strive to ensure the legacy of individual artists, to educate the public about macular degeneration, vision, and art, and to inspire a deeper respect for the human capacity to adapt and change. Our hope is that the work we present provides incontrovertible evidence that, even with compromised eyesight, the visual world remains beautiful and within reach.”
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.
Debbie MacIntosh reached out to us earlier this year to ask permission to use the AMD Awareness pin design to create a hooked rug. What follows is Debbie’s inspiration and process in creating the hooked rug from the AMD Awareness pin design in her own words, accompanied by photos of the process. Small edits were made for clarity. Thank you Debbie for sharing your creativity and inspiration with us and the AMD community!
I have been a rug hooker for a number of years. This is not just a craft for me, but a vehicle to explore my own creativity. It has grown from a hobby to my way of creating statements of what is important to me, and my journey in this life. I may not be perfect in the execution of the design, but I am very passionate about it.
I have been following the American Macular Degeneration Foundation (AMDF) for quite a while now. I read the post of theirs that introduced the newly created AMDF pin. It was designed in an effort to raise awareness about age-related macular degeneration. The reason I follow the AMDF is because I have wet macular degeneration. I am currently undergoing treatments monthly. I have it in both eyes.
I contacted the foundation and asked if I might use the design of the pin to create a rug from the design. This was important because I want my rug hooking journey to reflect what is significant for me.
As a rug hooker, it is very important to follow the rules of copyright for obvious reasons of honesty. It gives me permission to copy the design of the pin which allows me to show my rug to fellow fabric artists. I was granted permission. to hook the design on Feb 22nd, 2022, and ordered the wool on March 24th. If I show it anywhere, credit for the design will be given to the AMDF.
We rug hookers are an artistically curious and supportive group with national and international connections.
My journey with this disease left me wondering if I would lose my sight, but perhaps, most importantly, it spurred me on to create beauty everyday. A woman I very much admire, Deanne Fitzpatrick, a noted fabric artist in Amherst, Nova Scotia, is a wonderful mentor to fabric artists. She has created her mantra, Create Beauty Everyday, to encourage and aid people in their personal development as fabric artists. She also speaks about creating what you love, and creating rugs that have meaning and beauty for oneself.
This pin fit the bill for me for several reasons: I hook with a number of people who are now retired. While rug hooking is getting wildly popular with the younger age group, many seniors are actively involved in this craft; a perfect age group to spread the word about age-related macular degeneration (AMD).
I also saw this pin as a work of beauty. Symbolism is important in creating rugs. The beauty of the abstract symbolism is perfect for the rug. Following is the description of the pin, as expressed by the AMDF:
EYES – The central shape of the design is comprised of four overlapping eye shapes. AMD is a disease that affects the eyes and vision.
THREE ORANGE DOTS – AMD is the 3rd leading cause of blindness worldwide. Risk increases with age, and is 1 in 3 by the age of 75.
BLUE IRIS – Though lifestyle and genetics play a role, people with blue eyes are at an increased risk.
STARBURST CENTER – AMD can lead to central vision loss as the disease progresses. Orange ‘petals’ surrounding the iris represents the marigold, a source of lutein and zeaxanthin. These nutrients have been shown to potentially reduce the risk of developing age – related macular degeneration, and for people who have AMD, to potentially slow the progress of the disease.
Creating the Rug
There are several steps in creating a rug. The first is really the thought process. Why do I want to create this rug? What colour scheme will I use? This was easier for me with this rug, as the colours are already established. However, wool must be dyed to match the colours.
Matching the Colors
I created the orange wool by dyeing wool from a gold blazer I had with onion skins. The black wool came from a deconstructed blazer. I made an artistic decision to use cream to outline the lines in the pattern. I consulted a wonderful fabric artist, Joan MacKenzie, who owns a local rug hooking shop in Sydney, Nova Scotia, and is an extraordinarily gifted dyer.
The blue was difficult for me to see clearly, but one thing I have gotten very comfortable with, is to ask other fabric artists to help with colour. I have NOT met one who is not gracious or helpful. Joan also helped me pick the white to use. You wouldn’t believe how many whites there are in wool! After Joan and I again met to discuss the wool, on April 2nd, I decided to not use the cream for the lines that create the 4 eyes; instead I decided to use a medium gold. This stood out better as the cream and white were too similar. I did not try to find a metallic golden yarn because it is synthetic and usually does not hook well for me. All the wool used is 100% wool, either new, or repurposed.
At the Virtual Rug Hooking School, in February 2022, members of the Rug Hooking Guild of Nova Scotia (RHGNS) offered valuable advice and support in the Find it Finish It (FIFI) Class. They are a wonderful group of supportive people who were helpful and interested in this rug coming to fruition. Ann Jones was the leader of the group, and she and all the other members of the class were so helpful, and we had lots of fun. Fun is important, and after 2 years of COVID, it was great to talk with other women, if only virtually.
Reproducing the Pattern
The next step is to reproduce the pattern on the backing. It obviously needed to be enlarged, but to what size? I had originally done it as a 6 in. round but decided to go with an 11 in. round so that I could get the detail in without crowding. I blew up the design as big as I could on my printer and then went to a business store to get it enlarged to the size I wanted. Here is the blowup of the pattern.
Transferring the pattern to backing is a bit of the sticky part for me. Luckily, my husband is super supportive and helped me transfer it to red dot. Red dot is a thin fabric which has dots that outline a grid that helps you keep your pattern straight. You put it over the pattern, and then trace the pattern onto the red dot with a sharpie. Then you transfer the red dot pattern to the backing, which in this case, I chose linen.
I can better manage straight lines because you can run a pencil between the ridges of the fabric and come out with a straight line. My hubby put the round pattern on the linen for me, which was very helpful to me.
Hooking the Rug
Since the pattern is now on backing, I have to cut the wool. I will be using mainly a #5 width cut in the various colours of the wool. The starburst center and smaller orange triangles, I chose to hook in a #3 cut, a smaller cut.
Now comes the super fun part, the actual hooking. I chose to start with the starburst symbol. This was the most emotional part of the rug for me, because it could reflect my future. I am thankful to the specialist who is following my progress. This is another emotion that is stirred in me, gratitude. I am just super grateful that my eyes have not deteriorated to the point I can no longer hook. If I get to this point, I will know that I have created pieces of beauty for my family and friends with much love, and enjoyment.
I hooked the starburst centre and left it at that as I lost the light. Black is a difficult colour to hook in the evening. Each day I do more. I have finished the outer blue and am now working on the small orange triangles.
I will continue to hook the small orange triangles while I am waiting for the medium gold wool to do all the outlining.
The medium gold wool was ready on April 2nd, and I am eager to start hooking in the lines. this lines will have to be slowly and carefully done. I always love a challenge and am so excited to fill in the lines. This is the extent of my hooking until April 4th.
On April 6th, I pulled the last loop of the rug. This makes me happy that I have created something that at times, presented a bit of a challenge for me. Here is a picture of the rug.
It still has to be pressed, hemmed, and binding put on. I am not sure if I will whip the outer edge yet, something to sleep on.
The finished rug is special for me. Of all the rugs I have done, this one is the only rug done especially for me. It presented some real challenges for me, but I loved every moment of making it. I hope this adaptation of the AMDF pin will help in some way, to promote public awareness of age-related macular degeneration.
There is more to life than dealing with AMD. The possibilities are out there. I know it can be scary, but you are not alone.
Many thanks to the American Macular Degeneration Foundation. Thank you for the work you do to promote awareness of this important health issue. Also, many thanks for giving me permission to adapt the pin to a rug. I loved the abstract design immediately, and in my somewhat biased opinion, made a lovely rug.
A study conducted at New York Presbyterian/Columbia University Irving Medical Center, and published in Nature Medicine, indicates that patients with macular degeneration are at higher risk of complications due to COVID-19.
The study, entitled “Immune complement and coagulation dysfunction in adverse outcomes of SARS-CoV-2 infection,” looked at 6,398 COVID patients during the first wave of the pandemic.
Among the patients, researchers tracked macular degeneration patients because, as Dr. Sagi Shapira explained, there was a suspected link between hyperactive complement system activity and more severe disease progression in COVID patients, and it is understood that macular degeneration is a disease driven by a hyperactive complement system.
The authors found that macular degeneration was strongly associated with poor outcomes from COVID-19, including increased need for intubation and increased mortality. Those in the study with macular degeneration and who died also succumbed more quickly than other patients. Neither age nor sex could explain the increased succeptibility of AMD patients to this infection.
To be clear, this study does not indicate that AMD patients are more at risk of GETTING COVID-19, but IF they do become infected, they are at more risk of complications.
What You Can Do
We share this with you not to alarm you, but to empower you to make the best possible decisions for your health and safety.
Evidence is strong that wearing a mask (fitted and worn properly) while in public, social distancing, frequent and thorough hand-washing, and avoiding public and private gatherings (even amongst family and friends) greatly reduces your risk of contracting the virus.
And click here for another article on increasing your protection with double-masking and how to do it properly:
Additionally, intentional planning to reduce your number of outings reduces your exposure. For example, stocking up on groceries in order to reduce frequency of trips to grocery stores, or, even better, having groceries delivered, will reduce your exposure, and therefore risk, to the virus that causes COVID-19.
We are not doctors and can’t advise you on your decision to receive the COVID-19 vaccine, but we hope this information will help you make the best decision for you, under your doctor’s advice, as you make choices for your health and safety..
What Else You Can Do
Your doctors may not be aware of this study. COVID-19 is still a new virus and keeping up with all the information is challenging.
Before visits to any of your doctors, ask that they schedule you during low traffic times, ask what their safety protocols are, and let them know you have a condition that is suspected to greatly increase your risk of COVID-19- related complications should you contract the virus. You can also forward this study to them.
While we aim to empower you with this information, we know that it may raise questions. You can leave your question in the comments below or send your questions to us through the contact form on our site. It’s possible that we won’t be able to answer all of your questions, nor respond to you individually, and remember, our team is not equipped to give you individual medical advice. But, if there are questions we can answer, we’ll update this article or answer your questions in comments.
Please share this article with your friends and loved ones, both to inform them of your risk, but also so that they may share it with their friends and family so that we can get this information into the hands of anyone who needs it.
If this work is important to you, please consider supporting us today. You can become a supporting monthly member, or make a one-time donation today by clicking below.
Here at AMDF, our tight-knit team switched from regular, in-person meetings to a year of working remotely and, yes, using Zoom! Perhaps you have also discovered this, but, somehow, that break from our usual routines inspired us to think outside the box.
Here are the highlights of 2020:
Aside from having to change our internal work routines, we immediately thought about how COVID might be affecting the community and how we could help.
As information about Covid-19 transmission through close contact with others became available, we wondered: Would AMD patients, and especially those receiving anti-VEGF injections for wet AMD, have concerns about getting to a clinic, or about being in the clinic for a treatment? If they did have concerns, what should they know?
To find the answers, we connected with the American Society of Retina Specialists and developed a survey that would also help doctors understand patients’ perspectives. Then we sent it to our substantial email list, and received more than 1,500 responses almost immediately!
We reported those mostly positive findings in our summer print newsletter: 97% of those who’d had an appointment either went or rescheduled; 93% felt safe getting there; and 95% felt safe during interactions with doctors and staff. Finally, we incorporated them in a report, “Coronavirus and Your Macular Degeneration Care,” which we developed based on guidelines issued by the American Academy of Ophthalmology.
With a strong sense of “we are all in this together” sweeping much of the nation, we also strengthened our connections with other mission-aligned organizations, and found some highly collaborative partners.
We joined with Research to Prevent Blindness(RPB, with whom we also are co-funding research grants) and a number of other eye-science- supporting foundations to launch scEYEnce, a national messaging campaign created to focus attention on the astounding treatments emerging from vision scientists and the need to fund more at the federal level. AMDF supports five of the eleven researchers listed as AMD scientists.
We joined the Low Vision Working Group of the ITEM Coalition (Independence Through Enhancement of Medicare and Medicaid) to develop an advocacy plan for Medicare reimbursement for low vision assistive devices. Our letter to the Centers for Medicare and Medicaid Services is set to be delivered in early January of 2021.
And we connected with four other AMD nonprofits to pool our best resources for an AMD community, online bulletin board launching in early 2021.
Continued Commitment to Advocacy
Even though we could not make our usual trips to Washington, D.C. to bring the voices of the AMD community into meetings with legislators, we still connected them by using Zoom (what else?) to capture and deliver an empowering, Congressional Briefing message from Sensei Jack Stewart. Sensei Stewart is a Marine veteran who lost his sight to macular lesions in his 20s – as well as a sculptor, retired respiratory technician, master teacher (or sensei) of Zen archery and Japanese sword fighting, and Secretary and Treasurer of the Blind Veterans Association of Vermont.
Keeping the Research Wheels Turning
As the world’s focus turned to Covid, we kept our commitment to AMD research (with your help).
Throughout the pandemic, we have maintained a strong connection with new trends in AMD research, funding more than a half million dollars in grants, with some going to extensions of currently-supported scientists and some to new grantees.
From all of our funded researchers, we heard that they’ve had to adapt to Covid protocols in the lab, which rearranged their timelines to an extent, but did not derail them from advancing their work.
Some of the discoveries emerging from their investigations will be incorporated in an online educational program for patients and caregivers, due in February, that AMDF developed with support from a grant from Novartis. And all of their progress will soon be available on an upgraded AMDF web site, which we have quietly been building this year.
Coming in 2021
So much of our work in 2020 will be coming to fruition in 2021 and we’re pretty excited about these upcoming offerings!
Starting in early 2021, you will be able to access a more in-depth conversation with Sensei Stewart (who will teach you how to destress with a sigh) and his message to “improvise, adapt and overcome,” when AMDF launches new AMD – Mind, Body, Spirit video programming on our YouTube channel.
The shows are being created to address unmet needs of living with macular degeneration which, as it threatens sight, can impact our whole being.
In addition to Sensei Stewart, our pilot episodes include connecting you with a yoga instructor who is legally blind due to wet AMD yet teaches yoga to people with vision loss. You will also meet a deeply caring couple, one of whom has sight and one of whom does not, as they lead us through the subtleties and complexities of how vision loss impacts how we see ourselves, and how those perceptions impact our relationships.
We will also be launching a cooking series designed for optimum health and safety for people with vision loss and AMD.
So Much More
The above are just some of the highlights of 2020 and upcoming iniitatives in 2021. But there’s so much more, including announcements about important research developments, an upcoming PBS interstitial programming piece to raise awareness, a remake of our Hope and Cope DVD, initiatives to connect the voice of the AMD community to the medical community, Arts and Culture projects, upgrades to our website, and a relaunch of the free KeepSight journal.
Of course, our tireless team will continue our day-to-day work of connecting AMD patients to resources and materials and answering questions. So, please be in touch.
ALL of this is made possible by the generous and ongoing support of those of you in the AMD community.
Will you add your support? Before the year ends, you can become a supporting monthly member, or make a one-time donation today by clicking below.
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.
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.