February is AMD/Low Vision Awareness Month

Low vision affects millions of Americans — including many older adults. People with low vision aren’t blind, but because of their vision loss, they may not be able to do everyday tasks like driving or reading even with glasses.

What is Low Vision?

When your eyesight is impaired to the degree that you struggle with daily tasks like reading or cooking – or that you have difficulty recognizing faces, you may have a medical condition referred to as low vision. Someone with low vision can’t simply put on a pair of glasses or contacts and see well; this condition is beyond the typical loss of vision that occurs with aging.

Individuals experiencing low vision can struggle with maintaining independence; hobbies, reading and even socializing may become challenging as vision loss progresses. Because of the impact low vision can have on your life, it is important to have your eyes checked by a low vision specialist if you have any concerns. Since it is unusual to be able to restore vision once it is lost, screenings can help preserve the vision you have and help you access adaptive lenses and devices if you need them. While there is not a cure for low vision,  a low vision specialist can help you adapt and if needed, create a vision rehabilitation program designed to meet your specific needs.

If you are experiencing trouble seeing even with prescription eye glasses, ask your optometrist or ophthalmologist for a low vision evaluation. If your practitioner does not perform this evaluation, request a referral to a low vision specialist in a private practice, at a Braille Institute or a University Eye Care Institute. 

Low vision is often caused by one of these conditions:

  • Age-related macular degeneration (AMD) –AMD is a progressive eye condition affecting as many as 15 million Americans. The disease attacks the macula of the eye, where our sharpest central vision occurs, affecting reading, driving, identifying faces, watching television, safely navigating stairs and performing other daily tasks. Although it rarely results in complete blindness, it robs the individual of all but the outermost, peripheral vision, leaving only dim images or black holes at the center of vision. Read more

  • Diabetes Diabetic retinopathy is the most common diabetic eye disease and a leading cause of blindness in American adults caused by changes in the blood vessels of the retina.

In some people with diabetic retinopathy, blood vessels may swell and leak fluid or blood inside the eye. In other people, abnormal new blood vessels grow on the surface of the retina. The retina is the light-sensitive tissue at the back of the eye. A healthy retina is necessary for good vision.  Read More 

  • Glaucoma Glaucoma is a disease that causes damage to the major nerve of the eye called the optic nerve, a part of the central nervous system that carries visual information from the eye to the brain

The eye experiences a gradual increase of intraocular pressure (IOP) due to an imbalance of the fluid produced in the eye and the amount of fluid drained. Over time, elevated IOP can cause vision loss. The most common form of glaucoma is primary open angle glaucoma which affects about 3 million Americans. However, there are other types including narrow angle, congenital, normal tension, and secondary glaucoma. Read more

Reducing your risk for Low Vision

Practicing healthy daily lifestyle habits can reduce your risk for low vision. A healthy diet, not smoking and maintaining healthy blood pressure are important first steps. Other healthy habits that can lower the risk include:

  • Eat a diet with plenty of green, leafy vegetables such as kale, spinach, and collard greens, and fresh fruit.
  • Fish that is high in omega-3 fatty acids is good for eye health. Try to include it in your diet at least once or twice a week. Types of fish that are high in omega-3 fatty acids include salmon, sardines, mackerel, herring, and albacore tuna.
  • It’s important to keep your body healthy. Maintain a healthy weight, exercise regularly, maintain healthy blood pressure and cholesterol levels. The healthier your body, the more it can foster good eye health. Visit our website for eye healthy recipes Eye Cook.
  • Protect your eyes. Wear sunglasses and a hat with a visor in bright sunlight to protect your eyes from potentially harmful ultra-violet (UV) light and blue light.

Low Vision Reading Apps on Your Smartphone

Reading often is one of the most difficult challenges for visually impaired people. Many people with low vision give up reading altogether, because what used to be an enjoyable, effortless activity now requires thought, preparation and a lot of adjustment. In short, reading is just no fun anymore. 

The American Academy of Ophthalmology (AAO) has listed some of the top apps, devices and resources for people with low vision, below are a few listed for reading app, for more apps visit American Academy of Ophthalmology.

Reading

  • KNFB Reader (Android and iOS, $99.99) – This voice-to-text tool lets you take a picture of any text—books, recipes, product labels—and have it read back to you or converted to braille.
  • Audible (Android and iOS, $14.95 per month plus downloads) – Provides downloadable audiobooks, periodicals, newspapers and more. Their collection currently includes 200,000+ books.
  • Kindle app (Android, iOS, PC and Mac, free) – An e-reader app that allows you to download books. Books can be purchased and directly downloaded from Amazon, or downloaded from your library app into the Kindle app. The free Kindle app can be downloaded onto many iOS and Android devices.
  • Bookshare (Android and iOS, $50 per year) – An online library for people with low vision. Currently, the Bookshare collection contains nearly 850,000 titles, downloadable in a choice of formats including ebooks, audio, braille, and large font. Membership requires verification of your print disability, and includes free downloads.
  • BARD Mobile (Android and iOS, free) – A talking book library that offers access to tens of thousands of titles. You must first enroll in the National Library Service (NLS) for the Blind and Print Disabled at the Library of Congress. Note that this program may only be available in the United States.

 

Regular eye exams are essential for all adults; it is recommended that adults over the age of 60 have eye exams each year. If your vision can not be improved to the point that you are able to see the things you need to see or read, your eye care professional can refer you to a low vision specialist. This specialist differs from a conventional optometrist and is trained to evaluate your low vision problem and offer solutions to help you retain or regain independence and the ability to do things you enjoy again.

 

More Low Vision resources

COVID-19 EMERGENCY RESEARCH

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A MESSAGE FROM ANTHONY B. NESBURN, DEF PRESIDENT & MEDICAL DIRECTOR

 

The world is being held hostage by coronavirus (COVID-19). The number of cases and deaths are climbing everyday. Scientists and pharmaceutical companies are working feverishly to create a vaccine, but it is at least a year away. There is also hope that existing FDA-approved drugs, such as hydroxychloroquine and azithromycin, may be able to ameliorate the disease and prevent deaths.  These need to be tested now—see below.

During this emergency, DEF Research Director Dr. Cristina Kenney’s laboratory is applying the knowledge gained from her work on age-related macular degeneration to join the search for drug(s) that may be an immediate bridge to treat COVID-19.

Much of Kenney’s research focuses on mitochondria, which play a vital role in disease and death from infections such as COVID-19. Mitochondria may help explain the severity of disease and response to treatment in different ethnic populations and age groups.

Kenney will focus on two crucial COVID-19 studies using her unique laboratory systems:

  1. Determine which promising experimental treatments for COVID-19 patients are most likely to benefit which patients.
  2. Determine the role of mitochondria in susceptibility to severe COVID-19 disease and death in different ethnic/racial populations and age groups.

UPDATE: DEF Researchers Making Progress in the Fight to Defeat COVID-19


Join us and others in supporting this work. At this critical juncture, any financial help you are able to provide to our vital research efforts to stop the scourge of coronavirus is greatly needed and deeply appreciated. 

Click here to  DONATE BY MAIL

Click to DONATE ONLINE:DonateNow


For more information on COVID-19 go to www.coronavirus.gov

Our Greatest Fear

The most intimate moment in the life of a parent happens as darkness overcomes the day and you tell your children a bedtime story, tuck them into bed, and kiss them goodnight.  For years, our son Tom needed a night light to eliminate his fear of the dark and allow him to sleep.

The other day I had the privilege of referring our friend Suzanne Thornton to Dr. Sameh Mosaed, a researcher and practicing physician at the Gavin Herbert Eye Institute (GHEI) with a special interest in glaucoma. Over lunch our friend Suzanne candidly talked about her overwhelming sense of fear at her loss of vision, the recent falls she had taken, and the steps up or down she couldn’t see.  Thankfully Dr. Mosaed is very confident in Suzanne’s prognosis based on the cutting edge improvement in surgical outcomes for glaucoma due to her research at GHEI.

For 8 years I served as a member of the Academy of Ophthalmology’s Foundation Board.  In that time we conducted a number of studies in all areas of vision preservation.  The one that I believe was most meaningful occurred when we asked thousands of people to express what frightened them most in life.  Frankly, I was really surprised at the results of the study.  I was sure that people would say maybe stage four cancer, or ALS, or some other terminal disease would be the thing that would frighten them the most.  I would have imagined that they might talk about the loss of a loved one or even the fear of a natural disaster.  The results of the study were very clear.  62% of all the participants said that the loss of vision was the single most frightening possibility they would ever have to face.

The Discovery Eye Foundation is committed to relieving people of their greatest fear by supporting the research that someday may eliminate most forms of blindness.  We remain grateful for all of your support as we strive to overcome people’s greatest fear, the loss of sight

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

A New Commitment to Vision

Meet Tom Sullivan – DEF’s Ambassador of Vision

Over the last 40 years, I’ve been committed to working on behalf of blind children and their families.  My involvement has spanned the entire gamut of participation – from direct involvement in the classroom and counseling parents to hosting organized 10K races and celebrity golf tournaments that carried my name.  In that time, my wife and I raised just over $8 million thanks to the generosity of so many people.  Though my commitment to this cause has not changed, I’ve chosen to take on a new challenge that has in every way re-energized my passion. 

I’ve recently become the Ambassador of Vision for the Discovery Eye Foundation (DEF), a remarkable organization that funds cutting edge research that I believe someday will eliminate many forms of blindness.  The principle reason for my enthusiastic commitment is largely due to the fact that DEF directly funds researchers and avoids institutional restrictions.

As of this blog, DEF is engaged in ongoing efforts to understand 5 main eye diseases – Retinitis Pigmentosa, Macular Degeneration, Keratoconus, Diabetic Retinopathy, and Glaucoma.  I can honestly tell you that breakthroughs are not only on the horizon, but in many cases they are imminent.  Over the weeks and months I’ll be telling you much more, specifically about our individual research projects.  

Any help you may choose to give on behalf of people struggling with vision loss will be deeply appreciated. I look forward to having many of you join my fight for sight. Your help can make a difference! Click here to donate.

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

 

 

A Second Vision

Kristin McDonald

For the last few years Kristin McDonald, a former actress and television spokeswoman, has been applying her make-up without the aid of her eyes due to retinitis pigmentosa, a condition that reduces a person’s peripheral vision until all that is left is a pinpoint of sight.

Today, she is in a first stage study that is offering her and others hope that the injection of stem cells might be the mechanism that could slow, and maybe even halt the effects of this horrible disease. Discovery Eye Foundation helped support many of the preliminary translational studies necessary to bring the clinical trial to the FDA and get this exciting, novel approach to the patients.

I am Tom Sullivan, Ambassador of Vision for the Discovery Eye Foundation, and I was rocked when my phone rang recently and I heard the sound of my friend Kristin crying.

“What’s the matter?” I asked with real concern.

Her tears were quickly replaced by laughter, joyous laughter.

“It might be working,” she said, “I mean, the cells just might be having an impact.”

“Meaning your feeling change in your vision?” I asked. 

“Tom,” she went on, “you won’t believe it. This morning when I was getting dressed and putting on my make-up, I saw my mascara in the mirror. Listen, I am not trying to tell you I can see, but since the cells were injected, I can focus on a light and even begin to notice shadows.”

“And, now,” she laughed again, “maybe I can put my mascara on straight!”

Kristin has no illusions about how far the injection of cells will take her; but, she is encouraged, as are many of the other patients who are part of Dr. Henry Klassen’s clinical study helped by DEF’s early stage funding.  Maybe the old phrase really does apply – you probably know the one I mean – “hope springs eternal in the human breast.” That goes for the researchers, the patients, and all of us who treasure the gift of sight.

To read more about Kristin McDonald, visit her website at secondvision.net

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

Stem-Cell Clinics for AMD Treatments: Choose Wisely

People considering stem-cell therapy for eye-related issues need to take precautions in choosing clinics at which to have their procedures, warned Ocular Surgery News in January 2017. Patients should “find clinics that are licensed, associated with an academic center, have a history of running clinical trials and do not require patients to pay out of pocket.”

genetic research abstract blue background 3d illustration In a presentation to the American Society of Retina Specialists, Dr. Ajay E. Kuriyan of the University of Rochester reported that three patients who underwent bilateral intravitreal injection of stem-cells for age-related macular degeneration (AMD) suffered bilateral vision loss. The clinic at which all three procedures were performed did not have a licensed ophthalmologist on-site, and the stem-cell injections were administered by a nurse practitioner, Ocular Surgery News reported. Each patient paid $5,000 for the procedure.

Kuriyan told Ocular Surgery News that there are several warning signs for potentially dangerous clinics, including whether the facility is a standalone clinic that is not affiliated with an academic institution or has no history of conducting clinical trials. The other big warning sign, he said, is if patients are asked to pay.

“Stem-cell treatments hold great promise for the treatment of AMD and other eye conditions,” DEF Medical Director Dr. Anthony Nesburn said. “Patients — and physicians — need to take great care in choosing the right studies in which to access such treatments.”

Lauren Hauptman

Medical Research Funding Needs Individual Donors

The Need for Medical Research Funding

About 1.75 million U.S. residents currently have advanced age-related macular degeneration with associated vision loss, with that number expected to grow to almost 3 million by the year 2020.

About 8.4 million individuals worldwide are blind from primary open-angle glaucoma, with that number expected to grow to almost 11 million by the year 2020.

About 22 million Americans have cataracts affecting their vision, with that number expected to grow to more than 30 million by the year 2020.

The economic impact of this increase of people with vision loss will be tremendous.  But right now scientist are working on ways to treat and eventually cure many eye diseases.  The only problem is the funding necessary to support this sight-saving research. Here is a look at the decline of medical research funding in the US and what you can do to help.
medical research funding

3/17/15


 

Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Drugs to Treat Dry AMD and Inflammation

12/2/14

Below is an article from the monthly Macular Degeneration Partnership E-Update on potential drugs to treat dry AMD and inflamation. To learn more about dry AMD, including stem cell treatments, go to AMD.org. You can also subscribe and have the monthly newsletter delivered to your inbox.clinical trials for drugs to treat dry age-related macular degeneration

There are many causes of age-related macular degeneration and any of them may prove a good target for treatment for dry AMD. A long list of these was discussed at the recent Academy of Ophthalmology meeting. They were divided into the types of drugs being studied. We’ll look first at inflammation and the complement factor system, which is part of the immune system.

Inflammation is known to be associated with macular degeneration. The target may be the inflammation itself, or the cause of the inflammation.

Lampalizumab (or anti-Factor D) is a drug that is injected into the eye. In earlier Phase II trials, it was shown to reduce the area of the geographic atrophy by 20%. A Phase III clinical trial is now underway for individuals with geographic atrophy from dry AMD. Several research sites are actively recruiting now and many others will start recruiting in the near future. For more information and a list of participating centers, visit Clinical Trials.

LFG316 is also an antibody and an injection. This Phase 2 study is a randomized clinical trial of a drug that targets the C5 complement pathway (part of our immune system). It is designed to test the safety and efficacy of different doses of LFG316. There are three arms in the study: one group receiving a higher dose of the drug; one group receiving a lower dose of the drug; one group receiving a sham injection (no drug). These are successive monthly injections for people with geographic atrophy (GA). It is taking place in multiple locations throughout the U.S. and is sponsored by Novartis. For more information and a list of participating centers, visit Clinical Trials.

Oracea is a pill for dry macular degeneration, now in Phase II/III clinical trials around the U.S.. The pill contains doxycyline, which suppresses inflammation. Participants will be randomly assigned to either receive the drug or a placebo. More information at Clinical Trials.

Zimura by Ophthotech has been tested as a drug for wet AMD, but also seems to affect the drusen of dry AMD. Zimura targets the complement pathway plays a significant role in dry AMD. A Phase 2/3 clinical trial investigating ZimuraTM for treatment of geographic atrophy, is in the planning stages.

Eculizumab was also presented. This intravenous treatment for dry AMD did not show the desired effect in clinical trial, so no further development is planned at this time.

POT-4 is another drug that targets the complement factor system involved in inflammation. It is delivered through injection into the eye. The Phase I trial is completed and a Phase II clinical will be announced soon.

Iluvien is a drug delivery system that has been used in patients with diabetic retinopathy. A Phase II clinical trial for dry AMD is underway, though it is no longer recruiting patients. This is an implant inside the eye that releases fluocinolone acetonide. For more information, see Clinical Trials.

Judi Delgado - age-related macular degenerationJudith Delgado
Executive Director
Macular Degeneration Partnership
A Program of the Discovery Eye Foundation

New Hope for Corneal Scarring

5/22/14

There are several etiologies for limbal stem cell deficiency of the front of the eye. These include chemical and thermal burns, Steven-Johnson syndrome (which is an autoimmune severe allergic reaction that causes a burn from within), congenital aniridia, and a few other insults such as contact lens over-wear. All of these cause severe ocular surface scarring and problems with the cornea. Many eyes with these diseases have problems with corneal healing. They do not have the stem cells to support ocular surface health. The scarring can be so severe in many cases that severe corneal blindness can result.

Limbal stem cells from the human cornea, with a protein known as p63 stained yellow. Cell nuclei (which hold the DNA) are stained red.  From eurostemcell.org
Limbal stem cells from the human cornea, with a protein known as p63 stained yellow. Cell nuclei (which hold the DNA) are stained red. From eurostemcell.org

In these cases, a simple corneal transplant will quickly fail and not result in any visual improvement. The reason for this is that the stem cells of the ocular surface have been damaged or burned out.

Visual rehabilitation for these eyes usually requires a limbal-corneal stem cell transplantation. The stem cells can be taken from the other healthy eye of the same patient, a living related donor, and or cadaveric tissue. In most cases systemic immunosuppression medications need to be taken for 1 to 3 years following surgery in order to minimize risk of rejection. Management of these patients is done in conjunction with an immunologist or a transplant specialist who can co-manage and monitor for systemic toxicity while the patient is on the these immunosuppressive medications. As most of these eyes also have concomitant glaucoma and scarring of the eyelids to the globe, co-management with a glaucoma specialist and an oculoplastic specialist is also required.

For patients who cannot be on systemic immunosuppression for other health reasons such as diabetes or cancer, they may require an artificial corneal transplantation. The artificial corneal transplantation is reserved as a last step for visual rehabilitation in these eyes. The only artificial cornea that has shown potential, is the Boston keratoprosthesis. Even this artificial cornea carries a high risk for infection and glaucoma. Very close monitoring of eyes that have an artificial cornea is required to monitor for infection and glaucoma progression. However these eyes do not require systemic immunosuppression.

Eye with Boston keratoprosthesis
Eye with Boston keratoprosthesis


The management of eyes with severe ocular surface disease is a difficult one for the cornea specialist. A subspecialist in severe ocular surface disease and limbal stem cell transplantation is required to manage these very sick eyes. At the Gavin Herbert Eye Institute, we have developed a team approach for the management of severe ocular surface disease patients and have successfully treated and are managing many patients who have otherwise no place to go.

Farid 3.6.14Marjan Farid, MD
Director of Cornea, Cataract, and Refractive Surgery
Vice-Chair of Ophthalmic Faculty
Director of the Cornea Fellowship Program
Associate Professor of Ophthalmology
Gavin Herbert Eye Institute, University of California, Irvine