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November Is Diabetic Eye Disease Awareness Month: Learn More About Diabetes and Your Eyes

retina with diabetic retinopathy

A retina with
diabetic retinopathy

November is Diabetic Eye Disease Awareness Month, which aims to increase awareness of diabetes and diabetic eye disease and encourage people with diabetes to seek treatment for vision problems related to diabetes. You can learn more about diabetes at What Is Diabetes? and ¿Qué es la diabetes? at VisionAware.

According to Prevent Blindness America, diabetes is the leading cause of new cases of blindness in adults—and all people with diabetes are at risk for vision loss and blindness from diabetic eye disease. African Americans, Native Americans, Alaska Natives, Hispanics, Latinos, and older adults with diabetes are especially at higher risk.

In addition, an emerging body of research in diabetes, vision, and health care indicates that significant differences in the quality and equality of eye care exist throughout the United States, specifically in the African American and Latino communities.

More About the Different Types of Diabetic Eye Disease

Diabetic Retinopathy

Although people with diabetes are more likely to develop cataracts at a younger age and are twice as likely to develop glaucoma as people who do not have diabetes, the primary vision problem caused by diabetes is diabetic retinopathy, the leading cause of new cases of blindness and low vision in adults aged 20-65:

NEI example of seeing with diabetic retinopathy: many blind spots and overall blurriness

What a person with diabetic
retinopathy sees

  • "Retinopathy" is a general term that describes damage to the retina.
  • The retina is a thin, light-sensitive tissue that lines the inside surface of the eye. Nerve cells in the retina convert incoming light into electrical impulses. These electrical impulses are carried by the optic nerve to the brain, which interprets them as visual images.
  • Diabetic retinopathy occurs when there is damage to the small blood vessels that nourish tissue and nerve cells in the retina.
  • "Proliferative" is a general term that means to grow or increase at a rapid rate by producing new tissue or cells. When the term "proliferative" is used in relation to diabetic retinopathy, it describes the growth, or proliferation, of abnormal new blood vessels in the retina. "Non-proliferative" indicates that this process is not yet occurring.
  • Proliferative diabetic retinopathy affects approximately 1 in 20 individuals with the disease.

Four Stages of Diabetic Retinopathy

According to the National Eye Institute, diabetic retinopathy has four stages:

  • Mild non-proliferative retinopathy: At this early stage, small areas of balloon-like swelling occur in the retina's tiny blood vessels.
  • Moderate non-proliferative retinopathy: As the disease progresses, some blood vessels that nourish the retina become blocked.
  • Severe non-proliferative retinopathy: Many more blood vessels become blocked, which disrupts the blood supply that nourishes the retina. The damaged retina then signals the body to produce new blood vessels.
  • Proliferative retinopathy: At this advanced stage, signals sent by the retina trigger the development of new blood vessels that grow (or proliferate) in the retina and the vitreous, which is a transparent gel that fills the interior of the eye. Because these new blood vessels are abnormal, they can rupture and bleed, causing hemorrhages in the retina or vitreous. Scar tissue can develop and can tug at the retina, causing further damage or even retinal detachment.

Diabetic Macular Edema

Diabetic macular edema [edema = a swelling or accumulation of fluid] (DME) can occur in people with diabetes when retinal blood vessels begin to leak into the macula, the part of the eye responsible for detailed central vision. These leakages cause the macula to thicken and swell, which, in turn, creates a progressive distortion of central vision.

Although this swelling does not always lead to severe vision loss or blindness, it can cause a significant loss of central, or detail, vision, and is the primary cause of vision loss in people with diabetic retinopathy. DME can occur at any stage of diabetic retinopathy, but it is more likely to occur as the disease progresses.

How Your Doctor Can Diagnose Diabetic Eye Disease

Diabetic retinopathy usually has no early warning signs. It can be detected only through a comprehensive eye examination that looks for early signs of the disease, including:

  • Leaking blood vessels
  • Macular edema (swelling)
  • Pale, fatty deposits on the retina
  • Damaged nerve tissue
  • Any changes to the retinal blood vessels

To diagnose diabetic eye disease effectively, eye care specialists recommend a comprehensive diabetic eye examination that includes the following procedures:

  • Distance and near vision acuity tests
  • A comprehensive dilated eye examination, which includes the use of an ophthalmoscope. In a dilated eye examination, it is the pupil that is dilated—not the entire eye. This allows the examiner to see through the pupil to the retina. Visual acuity tests alone are not sufficient to detect diabetic retinopathy in its early stages.
  • A tonometry test to measure fluid pressure inside the eye.
  • A fluorescein angiography test, if more serious retinal changes, such as macular edema, are suspected. Fluorescein angiography is an eye test that uses a special dye and camera to look at blood flow in the retina.
  • Your doctor may also use optical coherence tomography (OCT) testing to get a clearer picture of the retina and its supporting layers. OCT is a type of medical imaging technology that produces high-resolution cross-sectional and three-dimensional images of the eye.

Can a Vision Screening Diagnose Diabetic Eye Disease?

A vision screening is a relatively short examination that can indicate the presence of a vision problem, such as diabetic retinopathy, or a potential vision problem. A vision screening cannot diagnose diabetic eye disease; instead, it can indicate that you should make an appointment with an ophthalmologist or optometrist for a more comprehensive dilated eye examination.

What Is a Comprehensive Dilated Eye Examination?

A comprehensive dilated eye examination generally lasts between 30 and 60 minutes, and is performed by an ophthalmologist or optometrist. It should always include the following components:

A Health and Medication History

  • Your overall health and that of your immediate family
  • The medications you are taking (both prescription and over-the-counter)
  • Questions about high blood pressure (hypertension), diabetes, smoking, and sun exposure.

A Vision History

  • How well you can see at present, including any recent changes in your vision
  • Eye diseases that you or your family members have had, including macular degeneration, glaucoma, and diabetic retinopathy.
  • Previous eye treatments, surgeries, or injuries
  • The date of your last eye examination

An Eye Health Evaluation

  • An examination of the external parts of your eyes: the whites of the eyes, the iris, pupil, eyelids, and eyelashes.
  • A dilated internal eye examination: Special eye drops will dilate, or open, your pupil, which allows the doctor to observe the inner parts of your eye, such as the retina and optic nerve. This can help to detect subtle changes of the optic nerve in persons without any visual symptoms and potentially lead to early detection of disease, including diabetic retinopathy.
  • A test of the fluid pressure within your eyes to check for the possibility of glaucoma.

A Refraction, or Visual Acuity Testing

a phoropter

A refraction helps determine the sharpness or clarity of both your near (reading) and distance vision.

This includes testing your vision with different lenses (sometimes contained in a machine called a phoropter, pictured at right) to determine if your vision can be improved or corrected with regular glasses or contact lenses.

Visual Field Testing

Visual field testing helps determine how much side (or peripheral) vision you have and how much surrounding area you can see.

Humphrey Field Analyzer

The most common type of visual field test in a comprehensive eye exam is called a confrontation field test, in which the doctor briefly flashes several fingers in each of the four quadrants (above, below, right, and left) of your visual field while seated opposite you.

In some cases, your doctor may also want to perform a more precise visual field measurement, using a computerized visual field analyzer, such as the Humphrey Field Analyzer (pictured at left).

Your Examination Results

The doctor will be able to determine if the visual problems you are experiencing are normal age-related changes or are disease-related, and if additional testing, referral to another doctor or specialist, or treatments are needed. Learn more at Questions You Should Ask When Seeing an Eye Care Specialist at

More Information About Diabetic Eye Disease

Diabetes and diabetic retinopathy
In the News
Low Vision

New Research: The Number of New Cases of Low Vision and Blindness in Adults and Older Adults Is Expected to Double During the Next 30 Years

Glare from sunlight on sidewalk

How the world can look
with low vision

New research from Johns Hopkins University School of Medicine reveals that the annual number of new cases of blindness and low vision among people aged 45 years and older is estimated to double during the next 30 years.

Because data about the incidence of blindness and low vision in the United States was formally estimated more than a decade ago, using United States Census data from 2000, the study authors emphasize that more current and detailed estimates are needed to inform policy makers to meet the current and growing demands for low vision rehabilitation services.

According to lead author Tiffany Chan, OD, "These updated results may help policymakers plan for the future and decide how to allocate resources to help people with loss of vision, an often life-changing issue. We expect a greater need for services for those patients with low vision as the aging population increases over the next several decades."

From JAMA Ophthalmology

This important new research, titled Estimates of Incidence and Prevalence of Visual Impairment, Low Vision, and Blindness in the United States has been published online as an open-source article in the November 2, 2017 edition of JAMA Ophthalmology. JAMA Ophthalmology is an international peer-reviewed journal published monthly by the American Medical Association.

The authors are Tiffany Chan, OD; David S. Friedman, MD, MPH; Chris Bradley, PhD; and Robert Massof, PhD, from The Lions Vision Research and Rehabilitation Center and the Wilmer Eye Institute at Johns Hopkins University School of Medicine, Baltimore, Maryland. You can read more about Dr. Massof's low vision work at Meet Dr. Robert Massof from Johns Hopkins University: Innovator, Visionary, Pioneering Low Vision Researcher, and Visionize Collaborator on the VisionAware website.

First, An Explanation of Terms Used in the Research

Here is a brief explanation of two key terms used in this low vision research:

  • Prevalence: the number of cases of a disease or disorder—in this case, low vision—that are present in a particular population at a given time, or how widespread the disease or condition is.
  • Incidence: the number of new cases of a disease or disorder that develop in a given period of time.

About the Low Vision Research

Edited and excerpted from Low Vision, Blindness Expected to Double in Next 30 Years, via Medscape:

The annual number of new cases of blindness and low vision among people aged 45 years and older is estimated to double during the next 30 years, suggests a study published online November 2 in JAMA Ophthalmology.

"[A]ssuming the prevalence and mortality rates stay constant, we expect a greater need for services for those patients with [low vision] as the aging population increases over the next several decades," said [co-author] Tiffany Chan, OD.

Most low vision and blindness are related to aging, and both contribute greatly to disability in the United States. Visual impairment can interfere with daily activities and increases the risk for falls and medication mismanagement.

Knowing the incidence, or the number of new cases of low vision each year, is important for policy makers and may be more informative than prevalence, which represents the backlog of people who still need services. However, the prevalence and incidence of blindness and low vision in the United States have not been estimated for more than a decade.

The researchers used visual acuity measurements taken from 6,016 participants in the 2007 to 2008 National Health and Nutrition Examination Survey (NHANES). Because NHANES has data on age, sex, and race/ethnicity, researchers were able to analyze the data by these variables. They also used 2010 census data and constructed rate models to estimate the annual incidence of low vision and blindness for 2017, 2030, and 2050.

[Editor's note: The National Health and Nutrition Examination Survey, part of the National Center for Health Statistics, is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations.]

The investigators defined low vision as best-corrected visual acuity in the better-seeing eye of less than 20/60 (according to the World Health Organization and Medicare definitions) or less than 20/40 (according to consensus that limitations may occur at this level of acuity). They considered blindness as best-corrected visual acuity of 20/200 or less, or legal blindness as defined by the U.S. Social Security Administration.

Results suggested that both prevalence and annual incidence of low vision and legal blindness will roughly double during the next three decades among people aged 45 years and older.

In this age group, the estimated prevalence of best-corrected visual acuity less than 20/40 is estimated to increase from 3,894,406 in 2017 to 7,594,797 in 2050.

The estimated prevalence of best-corrected visual acuity less than 20/60 is expected to increase from 1,483,703 in 2017 to 2,893,490 in 2050.

The prevalence of legal blindness is estimated to increase from 1,082,790 in 2017 to 2,111,637 in 2050.

Likewise, the estimated annual incidence of best-corrected visual acuity less than 20/40 among people aged 45 years and older is expected to jump from 481,970 new cases in 2017 to 1,006,711 in 2050.

The annual incidence of best-corrected visual acuity less than 20/60 in this same age group is expected to increase from 183,618 new cases in 2017 to 383,539 in 2050.

The number of new cases of legal blindness is expected to increase from 134,002 in 2017 to 279,900 in 2050.

What Is Low Vision?

If your eye doctor tells you that your vision cannot be fully corrected with ordinary prescription glasses, medication, or surgery, but you find you still have some usable vision, you have what is called "low vision."

Having low vision means that even with regular glasses, contact lenses, medication, or surgery, you can find it difficult to perform everyday tasks, such as reading your mail, shopping, preparing meals, and signing your name.

Low Vision Optical Devices

One way to address low vision is through the use of low vision optical devices, such as magnifiers and magnifying reading glasses and small telescopes, and electronic magnifiers and magnifying systems, including electronic desktop and portable digital magnifiers.

All of these low vision optical devices should be prescribed by an ophthalmologist or optometrist who specializes in low vision and performs a thorough and comprehensive low vision examination with you.

Low Vision Non-Optical Devices

flexible-arm task lamp

Flexible-arm desk lamp

Low vision non-optical devices can also be helpful for people who have low vision.

Low vision non-optical devices can include improved lighting and flexible-arm task lamps, reading stands, absorptive sunglasses, typoscopes, tactile locator dots, and colored acetate sheets.

These non-optical devices are often recommended as part of a comprehensive low vision examination, and you can use them in combination with magnifiers and other low vision optical devices.

Vision Rehabilitation Services for Low Vision

"Vision rehabilitation" includes a wide range of professional services that can restore functioning after vision loss, just as physical therapy restores function after a stroke or other injury. Vision rehabilitation services allow people who have recently lost vision, are blind, or have low vision to continue to live independently and maintain their accustomed quality of life.

Although your eye doctor is the professional you'll likely turn to first when dealing with your own – or a family member's – vision loss, it's important to note that many different kinds of vision rehabilitation services are available in addition to the eye care provided by your family doctor, ophthalmologist, optometrist, or low vision specialist. In fact, your own doctor may not be aware of, or refer you to, these comprehensive vision rehabilitation services, which are often provided through a state or non-profit rehabilitation agency, at little or no out-of-pocket cost.

Who provides vision rehabilitation services?

Vision rehabilitation services for adults who have recently lost vision, are blind, or have low vision are provided by a team of specially trained professionals, which may include low vision therapists, vision rehabilitation therapists, and orientation and mobility specialists:

Low Vision Therapists

Certified Low Vision Therapists (CLVTs and SCLVs) instruct individuals in the efficient use of remaining vision with optical devices, non-optical devices, and assistive technology, and can help determine the need for environmental modifications in the home, workplace, or school. You can learn more about these professionals at the Low Vision Therapy website and the American Occupational Therapy Association – Low Vision website.

Vision Rehabilitation Therapists

Certified Vision Rehabilitation Therapists (CVRTs) teach adaptive independent living skills, enabling adults who are blind or have low vision to confidently carry out a range of daily activities. CVRTs work with individuals in their homes, rehabilitation facilities, and employment settings. You can learn more about these professionals at the Vision Rehabilitation Therapy website.

To learn more about what a Vision Rehabilitation Therapist does and how you could benefit, read What Is a Vision Rehabilitation Therapist?.

Orientation and Mobility Specialists

Certified Orientation and Mobility Specialists (COMS or O&Ms) teach the skills and concepts that people who are blind or have low vision need in order to travel independently and safely in the home and in the community.

O&Ms teach safe and independent indoor and outdoor travel skills, including the use of a long cane, electronic travel devices (such as GPS), public transportation, and sighted guide, human guide, and pre-cane skills. You can learn more about these professionals at the Orientation and Mobility website.

What You Can Learn with Vision Rehabilitation Lessons and Training

Locating Vision Rehabilitation Services

Your state rehabilitation agency or an online searchable database can help you locate vision rehabilitation agencies in your area and find the type of services that are right for you. See State and Local Rehabilitation Agencies in the VisionAware Directory of Services to locate agencies in your area.

More About the Research from JAMA Ophthalmology

Excerpted from the article Abstract and Introduction, with the full article available online:

Low vision and blindness are leading causes of disability among U.S. residents. Updated estimates of the prevalence of blindness and low vision were recently reported using population-based studies applied to current U.S. census data.

However, the incidence of blindness and low vision in the United States was formally estimated more than a decade ago using 2000 census data. More current and detailed estimates are needed to inform policy makers to adequately meet present and growing demands for low vision rehabilitation services.

Importance: Updated estimates of the prevalence and incidence rates of low vision and blindness are needed to inform policy makers and develop plans to meet the future demands for low vision rehabilitation services.

Objective: To provide updated estimates of the incidence and prevalence of low vision and blindness in the United States.

Design, Setting, and Participants: Visual acuity measurements as a function of age from the 2007-2008 National Health and Nutrition Examination Survey, with representation of racial and ethnic groups, were used to estimate the prevalence and incidence of visual impairments. Data from 6,016 survey participants, ranging in age from younger than 18 years to older than 45 years, were obtained to estimate prevalence rates for different age groups.

Incidence and prevalence rates of low vision (best-corrected visual acuity in the better-seeing eye of less than 20/40 and less than 20/60) and blindness (best-corrected visual acuity of less than or equal to 20/200) in older adults were estimated from exponential models, fit to prevalence rates as a function of age (specified in 5-year age bins).

The prevalence and annual incidence of low vision and blindness in the United States were estimated, using the 2010 U.S. census data by age, from the rate models applied to the census projections for 2017, 2030, and 2050. Data were collected from November 1, 2007, to October 31, 2008. Data analysis took place from March 31, 2016, to March 19, 2017.

Results: Of the 6,016 people in the study, 1,714 (28.4%) were younger than 18 years of age, 2,358 (39.1%) were 18 to 44 years of age, and 1,944 (32.3%) were 45 years of age or older.

There were 2,888 male (48%) and 3,128 female (52%) participants.

The prevalence of low vision and blindness for older adults (more than or equal to 45 years) in the United States in 2017 is estimated to be:

  • 3,894,406 persons with a best-corrected visual acuity less than 20/40
  • 1,483,703 persons with a best-corrected visual acuity less than 20/60
  • 1,082,790 persons with a best-corrected visual acuity of 20/200 or less

The estimated 2017 annual incidence (projected from 2010 census data) of low vision and blindness among older adults (more than or equal to 45 years) in the United States is:

  • 481,970 persons with a best-corrected visual acuity less than 20/40
  • 183,618 persons with a best-corrected visual acuity less than 20/60
  • 134,002 persons with a best-corrected visual acuity of 20/200 or less

Conclusions and Relevance: Low vision and blindness affect a substantial portion of the older population in the United States. Estimates of the prevalence and annual incidence of visual impairment assist policy planners in allocating and developing resources for this life-changing loss of function.

Related Information

In the News
Low Vision
Medical Updates
Public Policy

Why I Have Written Three Series of Articles About My Experience with Macular Hole and Pseudo Macular Hole

Joy Efron head shot

by Joy R. Efron, Ed.D.


People have asked why I have written three series of articles about my experiences with macular hole and pseudo macular hole.

The simple explanation is that I am attempting to reciprocate—to thank the many people who helped me—by helping others. My impressive visual recovery would not have been possible without skilled surgeons; my research, organization, preparation, techniques, and determination; my devoted husband, family, and friends; equipment; and the mentoring, encouragement, and motivation by other people (including total strangers) who had had macular holes. It is not possible to thank the people sufficiently who helped me. Thus,I am trying to express my gratitude to them by sharing information with others.

Importance of Acting Promptly

My hope is that people will act promptly if their vision deteriorates, ensure that they are monitored carefully and frequently by their retinal specialist, understand their condition and treatment options, be assertive about the need for specialized equipment and services, do everything in their power to maximize visual recovery, and have realistic expectations about surgery and visual recovery. This is the formula that worked for me and continues to work as I have encountered additional problems. However, we all have different ways of handling challenging situations. My approach is to ask questions, research, and get as much information as possible and then base decisions and actions based on knowledge. In my opinion, strict compliance to a difficult regimen can only be achieved if one understands the need and is goal-oriented, tenacious, and determined. Some people would rather have minimal contact at times like this. While most people strive to be as independent as possible, I believe that as a society, we are stronger when we are interdependent.

My Experience

I retired in 2004, after 42 years as an educator (teacher, administrator, professor) in the area of education of the blind. In 2009, while driving, suddenly the lane markers developed major "S" curves. This was followed by other visual distortions. My neighborhood looked like a war zone with buildings at crazy angles! Someone's head would suddenly appear to stretch out about two feet in length and then shrink to about two inches! When I was diagnosed with a macular hole in my left eye (no relationship whatsoever with macular degeneration), I was surprised. Despite all my experience and knowledge, I had never heard of this unusual condition. Further, there was no patient information whatsoever, and even today, eight years later, in the correspondence I have received from individuals experiencing macular hole, I have not heard of anyone who has received a brochure or any substantive information from an ophthalmologist. Further, there is still very little information about equipment, and few insurance companies are willing to cover the rental cost.

My Proactive Approach to My Diagnosis

I did a great deal of research and sent an e-mail to about 200 people (family, friends, colleagues, professionals), many of whom forwarded my e-mail. As a result, I was put into contact with a variety of people who had had macular holes (from Maine to Hawaii) and connected with all of them. There appeared to be a direct correlation between their ultimate visual recovery and (1) the length of time it took to get medical attention, and (2) their strict compliance with the face-down regimen. I found that being face-down was miserably uncomfortable, but I was determined to do everything in my control to maximize the desired outcome.

My surgeon verbally explained my condition and told me I would have to be face-down for six weeks but said nothing about equipment. Immediately after surgery, while still in the operating room, I was given a square piece of foam with cutouts for the eyes, nose, and mouth and was told to stay face-down for six weeks. This would have been impossible if I had not rented equipment and had the amazing support described above.

Why I Am Telling My Story

After I recovered, I was asked to write an article for the Braille Institute in an attempt to help others who might develop a macular hole. Soon after, I was encouraged to share my article on VisionAware in order to reach more people. "Surviving Recovery from Macular Hole Surgery" became a series with five parts, including factors contributing to a successful outcome, how to maintain face-down positioning after macular hole surgery, what to expect after surgery, and suggested resources.

The publication of this series in 2010 started a major volunteer effort on my part as I am contacted every week by people all over the world. Although I am not an ophthalmologist or a medical doctor, I have read and researched a great deal and have had extensive discussions with retinal specialists. When people contact me, I attempt to advise and guide them to the extent that I can while stressing the fact that they need to follow their doctors’ advice.

Development of Additional Condition: Macular Pseudohole

In 2012, I developed a related condition called a macular pseudohole in the right eye and had a similar surgery but with a shorter face-down period. As I mentioned previously, there is very little patient information for macular holes, but for pseudoholes, the information is practically non-existent. I followed my pattern of researching the topic thoroughly.

Two New Series Are Born

In 2016, the staff of VisionAware asked me to update my macular hole article as there have been many changes in medical theory, practice, and treatment. They also asked me to write an article on macular pseudoholes. As I started working, it occurred to me that the readership was probably very small since these are highly unusual conditions. I inquired as to the number of readers of the first series and was absolutely shocked to find there had been over 136,000 pageviews in the past 12 months! (This does not mean 136,000 readers; many people open a page several times.) This motivated me as it was obvious that very little information is still available to patients. As a result, I did a great deal of research in ophthalmology, reviewed all my e-mails on this topic from the past seven years, and consulted with a retinal specialist.

Macular Hole Update

The macular hole update series addresses advances in treating macular holes, recovery suggestions, and important issues facing patients during recovery. It is an eight-part series that was reviewed and edited by Dr. Mrinali Patel Gupta with the following titles:

Macular Pseudohole Series

The purpose of the article on macular pseudoholes was to discuss and explain the differences between a macular hole and a macular pseudohole, the effects of macular pseudoholes on vision prior to and after surgery, to help patients be aware of the potential side effects from the surgery, and how to exercise control to avoid some of these potential problems. It is a six-part series with the following titles:

We also added resources, acknowledgements, and my contact information.

Word to Readers

I reiterate—to anyone with a macular hole or a macular pseudohole, I encourage you to learn as much as you can, ask questions, be assertive, monitor your condition, follow your doctor’s advice, and do everything you can to maximize results. And, remember, a sense of humor coupled with laughter is very helpful! If I can be of any assistance, feel free to contact me.

Medical Updates
Personal Reflections

Appreciating Disability Employment Awareness Month

by Suzanne Turner, Guest Blogger

October has become one of the months that is known for many celebrations of awareness. This month highlights Breast Cancer Awareness Month, National Hispanic Heritage Month, White Cane Safety Day, Meet the Blind Month, and my favorite, National Disability Employment Awareness Month.

The reasoning behind my enthusiasm for Disability Employment Awareness is that I have come a long way from my days of working in a "sheltered workshop." As a teenager with hopes of attending college in the Department of Music at Jackson State University, I found myself in alarming situation. I was losing more of my vision, and I did not know how to stop it. However, this story is not about my vision, but the barriers I faced seeking competitive employment.

Medical Mutual Quality Care Navigation department From left to right Erica Hufgard Amanda Renta Suzanne Turner and Kimberly Howard

Breaking Down Employment Barriers

I left leaving Mississippi Royal Maid’s Sheltered Workshop for the Blind in 1984, where I had been earning $1.98 per hour when the minimum wage was $3.30, I knew that working as a blind person in this environment was not the characteristic that defined me. This really sank home when I heard this concept mentioned at the 2013 National Federation of the Blind National Convention. Even though I knew that I wanted to break through the traditional barriers of blindness, I did not yet have the socialization skills, nor the support I needed to rise above it. I was stuck! I became complacent! I did not know that someone was looking for me to become a light for others. Please do not misunderstand me; I am no saint! However, I have developed and assembled my talents, goals, and mission to give back to the community of a little of what I have been fortunate to receive.

Working in such an environment assembling brooms and mops prepared me for my opportunities, and I have come to realize that someone had to do it. Just think, without a broom or mop, homes, restaurants, and establishments would be filled with unwanted trash.

However, the difference for me is the underlining meaning of opportunity, equality, diversity, and inclusion. First, the opportunity should be your decision. Second, justice has to mean being fair to all. Third, diversity must include multiple aspects and finally, inclusion should be embraced. Without these principles, where do people who are blind fit in? Putting us in a box like a sheltered workshop working below the state wage and isolating people who are blind was unfair and degrading. However, if I had been making a decent wage, I might have never achieved or explored beyond where I worked. Those who work assembling brooms and mops should have been provided the same opportunities as people who are sighted.

I am appreciative of all of my experiences. They are what made me who I am today. When I worked on high powered machines, I was one of the best workers. I was taught by my grandmother to do the best of whatever is awarded. I still live by that today!

Grateful to My Employer: Medical Mutual of Ohio

As I mentioned, I am so enthusiastic about the celebration of Disability Employment Awareness 2017. My current employer has provided me with one of the most excellent opportunities that I ever could have expected. My life has come full circle, and I am forever grateful to Medical Mutual of Ohio (MMO). As a Quality Care Navigator (QCN), I provide Medicare Advantage members with concierge service. A Quality Care Navigator works with a cross-disciplinary team to provide outreach services to Medicare and Affordable Care Act enrollees, providing assistance with navigation of health care services and community resources, benefits optimization, peer support, and other relevant services. These beneficiaries are blind and disabled seniors who may become overwhelmed with the volume of information about their health care. QCN is a new and innovative department that supports, educates, and invests in the well-being of our Medicare Advantage members. Primarily, we reach out to them before they need to reach out to us. The most important factor for me is that I provide members with respect, integrity, and most of all, empathy, as I would want the same for me and for my family. I understand what they are going through when it comes to seeking community resources, affordable medications, assistance with copays, and more. I have lived their lives. Indeed, I know exactly how difficult it is to live on Social Security with Medicare premiums deducted or to choose what bill to pay this month versus the next.

On the other hand, my expertise in social services, programs, and associations that can offer support, and understanding reasonable accommodations to help them access the printed word has been a benefit to MMO’s blind beneficiaries. The relationships I have developed across the country have afforded me unselfish boundaries, and I am determined to close the gap on whatever is needed.

Transforming Dreams into Reality

Before becoming an employee of MMO, I interviewed with a well-known pharmaceutical company that hired me that same day. But, I was never was brought onboard properly. For six months, I was given excuses about why they were unable to modify their server to provide me with reasonable accommodations. As a blind person, I use a screen reader, braille display, and other adaptive aids that help me to be productive and satisfactory. Before this interview, I worked for a state college, the federal government, a nonprofit, and my own company. I was qualified. If I wasn't, why would the recruitment team have passed me through three interviews and offered me the job in the same day? I was what they were looking for. I had a master’s degree, 20 years of experience in social services, and solid written and verbal communication skills. They even offered me a higher wage than the job description.

The recruiters did the "right thing." They saw my credentials, but the manager saw only my blindness. It is unfortunate that they missed out on a great employee. However, MMO did not! It will be two years in December, and I am forever grateful and honored to be a part of something so special. Medical Mutual of Ohio lives by its motto, which is "We Do Things Right!" They not only do the right thing for their members but all employees as well. The funny thing about MMO is that they were looking for me. They wanted someone who reflected the population that the QCN department served. This is what everyone dreams about, the chance to be wanted by an employer. In my opinion, this is what the National Federation of the Blind means when they talk about "transforming dreams into reality." Yes, I can without a doubt say my dreams have been transformed into reality.

Low Vision
Personal Reflections
Public Policy

New Research: Two Potential Treatments for Dry Macular Degeneration and Geographic Atrophy

a retinal photograph of dry AMD

A retina with dry AMD

One of the most significant challenges facing eye and vision researchers is developing an effective treatment for dry age-related macular degeneration (AMD). Although there are a number of well-regarded FDA-approved drug treatments for wet AMD, the key to effective dry AMD treatment continues to be elusive.

Current treatments for dry AMD include a number of non-drug-related measures, including (a) nutritional supplements recommended by the Age-Related Eye Disease Study 2 (AREDS2), and (b) controlling a range of lifestyle factors, including diet, weight, blood pressure, smoking, and blue and ultraviolet light exposure.

Although a cure is not yet in sight, two early-stage clinical trials (both explained below) may show future promise as potential treatments for dry AMD:

Please note: Even though this research has produced interesting results, both projects are in their very earliest stages and must be subjected to additional, longer-term, rigorous study and clinical trials, encompassing many more years of research.

What Is Age-Related Macular Degeneration?

NEI image of how someone with macular degeneration sees: overall blurriness with a blind spot in the center

Seeing the world with AMD

Age-related macular degeneration (AMD) is a gradual, progressive, painless deterioration of the macula, the small sensitive area in the center of the retina that provides clear central vision. Damage to the macula impairs the central (or "detail") vision that helps with essential everyday activities, such as reading, preparing meals, watching television, playing card and board games, and sewing.

AMD is the leading cause of vision loss for people aged 60 and older in the United States. According to the American Academy of Ophthalmology, 10-15 million people have AMD and about 10% of people who are affected have the "wet" type of AMD.

About Dry Macular Degeneration

The dry (also called atrophic) type of AMD affects approximately 80-90% of individuals with AMD. Its cause is unknown, it tends to progress more slowly than the wet type, and there is not – as of yet – an approved treatment or cure. "Atrophy" refers to the degeneration of cells in a portion of the body; in this case, the cell degeneration occurs in the retina.

In dry age-related macular degeneration, small white or yellowish deposits, called drusen, form on the retina, in the macula, causing it to deteriorate or degenerate over time.

Photograph of a retina with drusen

A retina with drusen

Drusen are the hallmark of dry AMD. These small yellow deposits beneath the retina are a buildup of waste materials, composed of cholesterol, protein, and fats. Typically, when drusen first form, they do not cause vision loss. However, they are a risk factor for progressing to vision loss.

Wet (Neovascular) Macular Degeneration

In wet, or exudative, macular degeneration (AMD), the choroid (a part of the eye containing blood vessels that nourish the retina) begins to sprout abnormal new blood vessels that develop into a cluster under the macula, called choroidal neovascularization (neo = new; vascular = blood vessels).

Because these new blood vessels are abnormal, they tend to break, bleed, and leak fluid under the macula, causing it to lift up and pull away from its base. This damages the fragile photoreceptor cells, which sense and receive light, resulting in a rapid and severe loss of central vision.

Two Clinical Trials for Dry AMD and Geographic Atrophy

Two current clinical trials focus on geographic atrophy (GA), which is the most severe and advanced form of dry AMD. GA involves patches of cells in the retina that have degenerated or died off:

  • Atrophy refers to the degeneration of the deepest cells of the retina, called the retinal pigment epithelium (RPE).
  • Geographic refers to the shape of the atrophied portion of the retina, which resembles the irregular outline of a land mass (geography).
  • The RPE helps to maintain the health of the retinal photoreceptor cells, called rods and cones. These photoreceptor cells are triggered by light to set off a series of electrical and chemical reactions that helps the brain to interpret what the eye sees.
  • The degeneration of the RPE cells also leads to the death of the rods and cones.
  • At present, there is no medical or surgical treatment for geographic atrophy.

The First Clinical Trial: Cell-Based Therapy

One treatment for dry AMD that may show promise is cell-based therapy, derived from umbilical cord tissue, called palucorcel. The researchers emphasize that it is not the same as stem cell therapy. Early results from the phase 2 FILLY clinical trial were presented at the American Academy of Optometry 96th Annual Meeting, October 11-14, 2017, in Chicago, Illinois.

More About the Cell-Based Therapy Research

Edited and excerpted from Cell-Based Therapy for Dry AMD Promising in Early Trial, via Medscape:

A cell-based therapy derived from umbilical cord tissue could someday treat geographic atrophy caused by age-related macular degeneration (AMD), early studies of this novel therapy suggest.

Lead investigator Sheila Hickson-Curran, MCOptom, is director of ophthalmology at the Janssen Pharmaceutical Companies of Johnson & Johnson. [Her research team] is developing an injectable cell-based product they have labeled palucorcel.

She emphasized that palucorcel is not stem cell therapy. The cord tissue from which palucorcel was derived for use in this trial came from a baby born approximately nine years ago. One umbilical cord can provide an almost endless number of cells, she said.

Dr. Hickson-Curran was circumspect about the preliminary findings. "We cannot yet claim [effectiveness] because our numbers are small and they do not come from a randomized controlled clinical trial, but this approach definitely has potential," she said.

"This is the third clinical trial with these cells, and what we have learned is that the cells can improve the vision of some patients with geographic atrophy. In the phase 1 trial, some gained at least 15 letters on [the Early Treatment Diabetic Retinopathy Study] chart, and this was sustained for at least 18 months."

In her presentation, Dr. Hickson-Curran reported findings from the … phase 2b PRELUDE clinical trial, which will follow patients [for five years]. Twenty-one patients (average age 77 years) with geographic atrophy related to AMD enrolled in the trial.

Thus far, very early findings from the trial show that the procedure proved safe, with no reports of retinal tears or detachments, significant [bleeding], or endophthalmitis (i.e., infection). Optimal placement of [the injected] cells has resulted in maintenance of vision. "These are patients with advanced disease, so we don't expect [substantial] improvement in vision," she said.

You can read more about this cell-based therapy, including the injection technique and delivery system used in the research, at Cell-Based Therapy for Dry AMD Promising in Early Trial.

The Second Clinical Trial: APL-2 Injections

Another potential treatment for dry AMD that may show promise is the drug APL-2, which is administered as an eye injection monthly or every other month for 12 months, followed by six months of monitoring after the end of treatment. Researchers have released phase 2 results of the FILLY clinical trial, which included 246 patients across 40 testing sites in the United States, Australia, and New Zealand.

More About the APL-2 Research

Edited and excerpted from New drug reduces rate of progression of incurable eye disease, via Medical Xpress:

An international study has found a way to slow the progression of dry age-related macular degeneration—one of the most common causes of vision loss in people over the age of 50.

The Phase 2 clinical trial (known as the FILLY trial) was sponsored by Apellis Pharmaceuticals and included 246 patients across 40 testing sites in the United States, Australia, and New Zealand. [Editor's note: You can see the listing of all testing sites in the FILLY clinical trial at Study Contacts and Locations.]

"[Geographic atrophy] (GA) is like having moth-eaten holes in your vision and they slowly all join up in the middle part of the vision, destroying the ability to read, drive, and recognize faces," [Principal Investigator] Professor Robyn Guymer says.

Apellis Pharmaceuticals developed a new compound called APL-2 for treating patients with GA. Patients were given [eye] injections either monthly or every other month for 12 months, resulting in a reduction in GA lesion growth of 29 per cent and 20 per cent respectively, compared to control patients.

Additionally, ...a greater effect was observed during the second six months of the study: a reduction in GA lesion growth rate of 47 per cent with monthly administration, and a reduction of 33 per cent with every other month administration.

Based on these positive results, Apellis plans to proceed with Phase 3 studies as soon as possible.

You can read more about the APL-2 phase 2 clinical trial results at New drug reduces rate of progression of incurable eye disease.

What are Clinical Trials?

In order to receive approval from the U.S. Food and Drug Administration (FDA), a new drug or treatment must be proven to be both safe and effective by undergoing a rigorous series of controlled unbiased studies. To prevent bias, neither the patient nor the examiners can know which patients received the actual treatment and which were the untreated (or "control") subjects.

These are called "double blind" or "double masked" studies and usually yield the most reliable results. The medication is coded and patients are placed at random into either the treatment or control group. When the study is concluded, the code is revealed and it is then possible to determine who received the actual drug and who received the inactive substance, or placebo.

As defined by the U.S. National Institutes of Health, most clinical trials are designated as Phase 1, 2, or 3, based on the questions the study is seeking to answer:

  • In Phase 1 clinical trials, researchers test a new drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe and effective dosage range, and identify possible side effects.
  • In Phase 2 clinical trials, the study drug or treatment is given to a larger group of people (100-300) to determine if it is effective and to further evaluate its safety.
  • In Phase 3 studies, the study drug or treatment is given to even larger groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
  • In Phase 4 studies, after the Food and Drug Administration has approved the drug, continuing studies will determine additional information, such as the drug's risks, side effects, benefits, and optimal use.

VisionAware will provide updates on these clinical trials as results become available.

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