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Researchers Create Light-Sensitive Retinal Cells for Potential Retinitis Pigmentosa Treatment

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United States-based researchers have restored light sensitivity in animal subjects with a condition similar to retinitis pigmentosa. Their work has demonstrated that it is possible to create replacement genetically modified [i.e., via gene therapy] light-sensing retinal cells from cells that do not normally react to light.

This research is in its earliest stages and has been conducted only with laboratory animals; nevertheless, the concept shows great promise for persons with retinitis pigmentosa and some forms of Leber congenital amaurosis.

The research, entitled Restoration of visual function by expression of a light-gated mammalian ion channel in retinal ganglion cells or ON-bipolar cells (explained below) was published in the December 8, 2014 Early Edition of Proceedings of the National Academy of Sciences. Proceedings, first published in 1915, is the official journal of the National Academy of Sciences of the United States. It publishes research reports, commentaries, and reviews that span the biological, physical, and social sciences.

The authors are Benjamin M. Gaub, Michael H. Berry, Amy E. Holt, Andreas Reiner, Michael A. Kienzler, Natalia Dolgova, Sergei Nikonov, Gustavo D. Aguirre, William A. Beltran, John G. Flannery, and Ehud Y. Isacoff, who represent the following institutions: University of California, Berkeley; School of Veterinary Medicine and Perelman School of Medicine, University of Pennsylvania, Philadelphia; and Lawrence Berkeley National Laboratory, Berkeley, CA.

About Retinitis Pigmentosa

Retinitis pigmentosa (RP) is part of a large group of hereditary retinal conditions or dystrophies, involving one or several layers of the retina. RP occurs in approximately 1 in 4,000 people in the United States. At present, there is no cure.

A scene as it might be viewed by a person with retinitis pigmentosa

Most individuals with RP initially experience difficulty with night vision and in low light levels. Central (straight ahead) vision is usually retained until late in the course of the disease, while peripheral (or side) vision becomes progressively more constricted, resulting in "tunnel vision" (pictured above).

Primarily, the retinal rod cells – light-sensitive, specialized retinal receptor cells that activate at low light levels and provide night vision – are involved, but there may also be some involvement of the retinal cone cells, which function best in relatively bright light and provide color vision and greater visual acuity than do rod cells.

You can read more about retinitis pigmentosa research at What Is Retinitis Pigmentosa? by Frank J. Weinstock, MD, FACS at the VisionAware website.

About the Research

Excerpted from Gene therapy could help with inherited blindness: Researchers managed to create new light-sensitive cells, via the UK National Health Service (NHS) News:

Experiments on blind mice and dogs have found that cells in the retina which are not normally light-sensing (i.e., retinal ganglion cells) can be genetically modified to respond to light.

[Editor's note: Ganglion cells, also called retinal ganglion cells, are neurons, or nervous system cells. They are located near the inner surface of the retina and give rise to optic nerve fibers that transmit information from the retina to several regions in the brain.]

The researchers used gene therapy to modify these cells. The cells responded to light after they were activated with an injection of a chemical called MAG, with the effects lasting up to nine days.

This animal study tested whether cells in the retina that do not respond to light could be made to respond. The [researchers] used genetic modification to produce a light receptor protein and a light-sensing chemical compound. This two-step process was tested on the retinas of blind mice and dogs.

Previous research found that although there is loss of these photoreceptors on the outer level of the retina, the connecting nerves underneath still function. Researchers were interested in whether they could get these connecting nerves (the retinal ganglion cells) to act as light-sensing cells, which could restore some vision.

The researchers first used genetic engineering to insert a gene for a receptor that responds to light in the presence of a chemical called maleimide-azobenzene-glutamate (MAG). This process uses a modified virus, called adenovirus, to carry the gene into cells. The genetically modified virus is injected into the retina. The scientists were able to get retinal ganglion cells to produce this receptor.

Afterwards, an injection of MAG could turn on the light receptors when they are exposed to light. However, the first set of laboratory experiments did not work well because the level of light required to activate the new light receptors was so high that it damaged the retina. After modifications, they produced a slightly altered chemical compound called MAG460, which responded to a less damaging wavelength of light.

Mice genetically engineered to lose the function of rods and cones by the age of 90 days were used. The researchers injected the mice's retinas with the adenovirus containing the light receptor gene. Afterwards, they injected the retinas with MAG460 and then measured the ability of the retinal cells to respond to light in the laboratory.

Finally, the researchers injected a canine version of the adenovirus and light receptor mixture and MAG460 into the retinas of three blind dogs and one normal dog.

The light receptors were successfully produced by most of the retinal ganglion cells. The chemical compound MAG460 they developed was able to cause the cells to react to blue or white light without causing retinal damage. The light receptor was also able to "switch off" in darkness. These experiments [illustrate] that, despite the original photoreceptors being damaged or dying, some function can be restored if other cells are undamaged.

More about the Research from Proceedings

From the article abstract:

Most inherited forms of blindness are caused by mutations that lead to photoreceptor cell death but spare second- and third-order retinal neurons.

We restored visual function to animal models of human blindness using a chemical compound that photosensitizes a mammalian ion channel. Virus-mediated expression of this light sensor in surviving retinal cells of blind mice restored light responses in vitro, reanimated innate light avoidance, and enabled learned visually guided behavior. The treatment also restored light responses to the retina of blind dogs.

Patients that might benefit from this treatment would need to have intact ganglion cell and nerve fiber layers. In general, these are patients diagnosed with retinitis pigmentosa and some forms of Leber congenital amaurosis.

Patients diagnosed with other types of blindness, for example, age-related macular degeneration or diabetic retinopathy, would not be candidates for this treatment.

Additional Information

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Medical Updates
Retinitis Pigmentosa

New Research: African-Americans with Diabetes Experience the Highest Rates of Vision Loss

retina with diabetic retinopathy

A new study has revealed that African-Americans with diabetes have higher rates of vision loss from diabetic macular edema (explained below) compared with other ethnic and racial groups – and inconsistent access to eye care and eye examinations is a likely contributor to this disparity.

From JAMA Ophthalmology

The research, entitled Prevalence of and Risk Factors for Diabetic Macular Edema in the United States , was published in the November 2014 edition of JAMA Ophthalmology, an international peer-reviewed journal published monthly by the American Medical Association.

The authors are Rohit Varma, MD, MPH; Neil M. Bressler, MD; Quan V. Doan, PharmD; Michelle Gleeson, PhD; Mark Danese, PhD; Julie K. Bower, PhD; Elizabeth Selvin, PhD; Chantal Dolan, PhD; Jennifer Fine, PhD; Shoshana Colman, PhD; and Adam Turpcu, PhD, who represent the following institutions: Keck School of Medicine, University of Southern California, Los Angeles; Johns Hopkins University School of Medicine, Baltimore, Maryland; Outcomes Insights, Inc., Westlake Village, California; The Ohio State University College of Public Health, Columbus; and Genentech, Inc., South San Francisco, California.

About the Research

Excerpted from Vision loss more likely for African Americans with diabetes, via Futurity Research News:

Diabetic macular edema (DME), one of the leading causes of blindness in diabetic patients in the United States, occurs when fluid and protein accumulates on the macula of the eye, which is part of the retina, causing it to thicken and swell. Central vision is affected and, if left untreated, can lead to slight blurring or even blindness.

"We were surprised that our research showed that African Americans have the highest rates of DME, when Hispanics tend to have the highest prevalence of diabetes," said Rohit Varma, professor and chair of ophthalmology at University of Southern California (USC) and director of the USC Eye Institute.

"There is not enough vision screening for DME among diabetics, yet there are much better therapies available that are covered by insurance. We hope that our research will help those in the position to influence policy to get a better handle on costs and where the need for treatment is the greatest."

For the study, researchers used the National Health and Nutrition Examination Survey (NHANES) database, a national data set measuring the health and nutritional status of American adults and children. As part of NHANES, subjects undergo a physical exam that includes photos of their retinas, which Varma's team reviewed to determine the prevalence of DME.

Clinicians should assess diabetes patients, especially those who are African American or Hispanic, more closely for vision loss, Varma says. Also, patients should do everything they can to control their glucose and monitor their own vision. Varma says he will next examine barriers African Americans face concerning access to eye care.

About 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.

Treatments for Diabetic Eye Disease

The first step in any treatment for diabetic eye disease is to maintain blood glucose, blood pressure, and blood cholesterol levels as close to normal as possible.

Treatment of diabetic macular edema has evolved a great deal in the last five to ten years, and is based on the severity of the edema. At present, there are three options:

  • laser treatment
  • Avastin, Lucentis, or Eylea injection
  • intravitreal steroids

Laser Treatment

This technique is used by retinal surgeons to treat a number of eye conditions, one of which is diabetic eye disease. A beam of high-intensity light is directed into the eye to seal off leaking blood vessels and prevent additional blood and fluid from leaking into the vitreous. The doctor administers eye drops to dilate the pupil and numb the eye before treatment begins.

Because lasers cannot restore lost vision, it is critical to maintain regular eye examinations so that treatment can be initiated as soon as diabetic eye changes are detected. There are two types of laser treatments for diabetic eye disease:

  • Focal laser treatment, also called photocoagulation: The retina is treated to stop or slow the leakage of blood and fluid from abnormal blood vessels within the eye. Focal laser, however, can also destroy surrounding healthy retinal tissue as it seals the leakage from abnormal blood vessel growth; therefore, it is not used on blood vessels directly under the macula, the center of the retina.
  • Scatter laser treatment, also called panretinal [i.e., encompassing the entire retina] photocoagulation: The areas of the retina away from the macula are treated to shrink abnormal blood vessels.

Avastin, Lucentis, or Eylea Injections

In diabetic eye disease, abnormal blood vessels develop that can break, bleed, and leak fluid. If left untreated, these damaged blood vessels can result in a rapid and severe loss of vision. The most effective treatments to date for this blood vessel damage are the anti-angiogenic drugs Avastin, Lucentis, and Eylea.

Angiogenesis is a term used to describe the growth of new blood vessels and plays a crucial role in the normal development of body organs and tissue. Sometimes, however, excessive and abnormal blood vessel development can occur in diseases such as cancer (tumor growth) and diabetic eye disease (retinal and macular bleeding).

Substances that stop the growth of these excessive blood vessels are called anti-angiogenic (anti = against; angio = vessel; genic = development), and anti-neovascular (anti = against; neo = new; vascular = blood vessels).

The focus of current anti-angiogenic drug treatments for diabetic eye disease is to reduce the level of a particular protein, called vascular endothelial growth factor or VEGF, that stimulates abnormal blood vessel growth in the retina; thus, these drugs are classified as anti-VEGF treatments. At present, Avastin, Lucentis, and Eylea are administered by injection directly into the eye after the surface has been numbed.

These drugs are powerful. The abnormal vessels will disappear within 24 to 48 hours; however, the vessels are not gone forever. They will come back, since the effect of the drug will wear off. The half-life of the drugs in the eye is about four to six weeks. Treating edema with these drugs requires frequent treatment.

Intravitreal Steroids

Kenalog or triamcinolone provide good control of the swelling caused by diabetic macular edema. Like Avastin, Lucentis, and Eylea, the steroid is injected into the eye; the swelling will disappear within 24 hours.

Steroids do, however, have some side effects. One in ten patients develop glaucoma from the steroid shot. Steroids can also cause cataracts. Nevertheless, steroid treatment can be a useful tool and can be combined with laser. This combination can eliminate the swelling and "dry up" areas of leaking blood vessels.

You can read more about treatments at What Treatments Are Available for Diabetic Eye Disease? by Lori Coors, M.D. at the VisionAware website.

More about the Study from JAMA Ophthalmology

From the article abstract:

Importance: Diabetic macular edema (DME) is a leading cause of vision loss in persons with diabetes mellitus. Although there are national estimates for the prevalence of diabetic retinopathy and its risk factors among persons with diabetes, to our knowledge, no comparable estimates are available for DME specifically.

Objective: To estimate the prevalence of DME in the US population and to identify associated risk factors.

Design, Setting, and Participants: A cross-sectional analysis of 1,038 participants aged 40 years or older with diabetes and valid fundus [i.e., retinal] photographs in the 2005 to 2008 National Health and Nutrition Examination Survey.

[Editor's note: A cross-sectional study analyzes and studies a population of subjects at one specific point in time, rather than over a longer, or more extended, period of time.]

Main Outcomes and Measures: The overall prevalence of DME and its prevalence according to age, race/ethnicity, and sex.

Results: Of the 1,038 persons with diabetes analyzed for this study, 55 had DME, for an overall weighted prevalence of 3.8% or approximately 746,000 persons in the US 2010 population aged 40 years or older. We identified no differences in the prevalence of DME by age or sex.

Multivariable logistic regression analysis showed that the odds of having DME were higher for non-Hispanic blacks than for non-Hispanic whites. Elevated levels of glycosylated hemoglobin A1c for each 1% and longer duration of diabetes (greater than or equal to 10 years vs. less than 10 years) were also associated with DME prevalence.

[Editor's note: The glycated hemoglobin (A1c) test, which can be done without fasting, measures the person's average blood glucose control for the past 2 to 3 months. A level between 5.7 and 6.4 suggests an increased risk of developing diabetes; a level greater than or equal to 6.5 indicates diabetes.]

Conclusions and Relevance: These results suggest a greater burden of DME among non-Hispanic blacks, individuals with high levels of hemoglobin A1c, and those with longer duration of diabetes. Given recent treatment advances in reducing vision loss and preserving vision in persons with DME, it is imperative that all persons with diabetes receive early screening; this recommendation is even more important for those at higher risk for DME.

Additional Information about Diabetes

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New Research: Top-Selling Eye Supplements Lack Scientific Evidence, Make Unsupported Claims

Cover of the journal Ophthalmology

An American research group has concluded that claims made about top-selling eye vitamin brands and products in the United States lack concrete scientific evidence supported by clinical trial outcomes.

The researchers also determined that many of the most heavily promoted and top-selling products do not contain ingredients and dosages identical to "eye vitamin" formulas that have been proven effective in the Age-Related Eye Disease Studies (AREDS and AREDS2), sponsored by the National Eye Institute.

The study findings established that, of the eleven popular supplements analyzed in the study, seven did not adhere to clinically proven formulas and all eleven made misleading claims regarding prevention and effectiveness. There were no clear statements indicating that at present, there is no proven benefit in using "eye vitamin" supplements for the primary prevention of eye diseases, such as age-related macular degeneration and cataracts.

Ophthalmology: the Journal

The supporting research, entitled Ocular Nutritional Supplements: Are Their Ingredients and Manufacturers' Claims Evidence-Based?, has been published online ahead-of-print on November 20, 2014 in Ophthalmology, the official journal of the American Academy of Ophthalmology. Ophthalmology publishes original, peer-reviewed research in ophthalmology, including new diagnostic and surgical techniques, the latest drug findings, and results of clinical trials.

The authors are Jennifer J. Yong, MD; Ingrid U. Scott, MD, MPH; and Paul B. Greenberg, MD, who represent the following institutions: Yale-New Haven Hospital-Waterbury Hospital, Waterbury, Connecticut; Penn State College of Medicine, Hershey, Pennsylvania; Providence VA Medical Center, Providence, Rhode Island; and the Warren Alpert Medical School of Brown University, Providence, Rhode Island.

The First Age-Related Eye Disease Study (AREDS)

The first Age-Related Eye Disease Study (AREDS) was a major clinical trial sponsored by the National Eye Institute to:

  • Learn more about the history of, and risk factors for, age-related macular degeneration (AMD) and cataract;
  • Evaluate the effect of high doses of antioxidants and zinc on the progression of AMD and cataract.

Results from the first AREDS trial, reported in October 2001, indicated that five years of supplementation with high doses of antioxidant vitamins, copper, and zinc reduced the risk of developing advanced AMD in 30% of individuals in the study who took the supplements and had already-existing moderate to advanced dry or wet AMD.

The original AREDS formulation included:

  • 500 milligrams (mg) of vitamin C
  • 400 international units of vitamin E
  • 15 mg beta-carotene (for non-smokers only)
  • 80 mg zinc as zinc oxide
  • 2 mg copper as cupric oxide (to avoid anemia with high zinc intake)

The Second Age-Related Eye Disease Study (AREDS2)

In May 2013, The National Eye Institute concluded the Age-Related Eye Disease Study 2 (AREDS2), which tested several changes to the original AREDS formulation:

  • The primary goal of the AREDS2 study was to determine if (a) adding omega-3 fatty acids or (b) lutein and zeaxanthin (the anti-oxidants found in dark green leafy vegetables) to the original AREDS formulation would make it more effective for reducing the risk of advanced AMD and cataract.
  • The AREDS2 research group also substituted lutein and zeaxanthin for beta-carotene, which prior studies had associated with an increased risk of lung cancer in smokers.

The researchers concluded that while omega-3 fatty acids had no effect on the formulation, lutein and zeaxanthin together appeared to be a safe and effective alternative to beta-carotene. Therefore, the addition of lutein and zeaxanthin to – and the subtraction of beta carotene from – the original AREDS supplement formula were recommended by AREDS2.

The AREDS2 formulation now includes:

  • 500 milligrams (mg) of vitamin C
  • 400 international units of vitamin E
  • 80 mg zinc as zinc oxide
  • 2 mg copper as cupric oxide (to avoid anemia with high zinc intake)
  • 10 mg lutein
  • 2 mg zeaxanthin

More about the Research

Excerpted from Top-selling eye vitamins found not to match scientific evidence, via Science Codex:

Research shows that, of 11 popular supplements analyzed, seven do not adhere to proven formulas; all 11 have misleading claims. Researchers have analyzed popular eye vitamins to determine whether their formulations and claims are consistent with scientific findings.

They determined that some of the top-selling products do not contain identical ingredient dosages to eye vitamin formulas proven effective in clinical trials. In addition, the study found that claims made on the products' promotional materials lack scientific evidence.

To test whether the products are consistent with the studies' findings, researchers compared the ingredients in top-selling brands to the exact formulas proven effective by AREDS and AREDS2. The researchers … identified the five top-selling brands based on market research collected from June 2011 to June 2012, and analyzed the brands' 11 products.

They found that, while all of the products studied contained the ingredients from the AREDS or AREDS2 formulas:

  • Only four of the products had equivalent doses of AREDS or AREDS2 ingredients.
  • Another four of the products contained lower doses of all the AREDS or AREDS2 ingredients.
  • Four of the products also included additional vitamins, minerals, and herbal extracts that are not part of the AREDS or AREDS2 formulas.

In addition, while all 11 of the products' promotional materials contained claims that the supplements "support," "protect," "help," or "promote" vision and eye health, none had statements specifying that nutritional supplements have only been proven effective in people with specific stages of AMD.

There were also no statements clarifying that currently there is not sufficient evidence to support the routine use of nutritional supplements for primary prevention of eye diseases such as AMD and cataracts.

Said author Jennifer J. Yong, MD, "Our findings underscore the importance of ophthalmologists educating patients that they should only take the proven combination of nutrients and doses for AMD according to guidelines established by AREDS and AREDS2. It's also crucial that physicians remind patients that, at this time, vitamins have yet to be proven clinically effective in preventing the onset of eye diseases such as cataracts and AMD."

A results table of the analyzed products (PDF file) is available online.

My Real-Life Examples

As a vision professional, I have long been interested in presenting accurate information about AREDS and AREDS2 supplements, including (a) the ingredients that have been proven effective in AREDS clinical trials and (b) the as-yet unproven ability of "eye vitamin" supplements to prevent the onset of AMD and cataracts.

As an example, I compared and contrasted the ingredient lists of Bausch + Lomb PreserVision Eye Vitamin and Mineral Supplement AREDS2 Formula (the formulation I take daily) and Alcon I-Caps Eye Vitamin and Mineral Supplement AREDS Formula (recommended for my mother).

Bausch + Lomb PreserVision AREDS2 Formula

PreserVision Supplement Facts

AREDS2 box
  • Serving size: 1 soft gel
  • Dosage: 2 per day
  • Vitamin C: 500 mg
  • Vitamin E: 400 IU
  • Zinc: 80 mg
  • Copper: 2 mg
  • Lutein: 10 mg
  • Zeaxanthin: 2 mg

Comparison: AREDS2 Recommendations

  • Vitamin C: 500 mg
  • Vitamin E: 400 IU
  • Zinc: 80 mg
  • Copper: 2 mg
  • Lutein: 10 mg
  • Zeaxanthin: 2 mg

Comparison Results

It's a perfect match. See for yourself:

AREDS2 label ingredients

PreserVision Eye Vitamin AREDS2 Formula
Soft Gels Supplement Facts

Alcon I-Caps Eye Vitamin and Mineral Supplement AREDS Formula

I-Caps Supplement Facts

AREDS I-Cap box
  • Serving size: 2 tablets
  • Dosage: 4 tablets per day
  • Vitamin A: 28,640 IU
  • Vitamin C: 452 mg
  • Vitamin E: 400 IU
  • Calcium: 120 mg
  • Zinc: 69.6 mg
  • Copper: 1.6 mg

Comparison: Original AREDS Recommendations

  • Vitamin C: 500 mg
  • Vitamin E: 400 IU
  • Beta-Carotene: 15 mg
  • Zinc: 80 mg
  • Copper: 2 mg

Comparison: AREDS2 Recommendations

  • Vitamin C: 500 mg
  • Vitamin E: 400 IU
  • Zinc: 80 mg
  • Copper: 2 mg
  • Lutein: 10 mg
  • Zeaxanthin: 2 mg

Comparison Results

Not even close to either AREDS or AREDS2. See for yourself:

I-Cap ingredient label

I-Cap Eye Vitamin and Mineral AREDS Formula Supplement Facts
Note: Values shown are for a two-tablet dosage.
Daily recommended dosage is 4 tablets.

A Summary of the Study Results from Ophthalmology

From the article abstract:

Purpose: To compare ingredients contained in top-selling brands of ocular nutritional supplements with the Age-Related Eye Disease Study (AREDS) and AREDS2 formulae and investigate the validity of claims made by manufacturers of leading brands of ocular nutritional supplements.

Methods: We examined the 5 top-selling brands of ocular nutritional supplements in the United States according to dollar sales tracked by SymphonyIRI (Waltham, MA) from June 2011 to June 2012. We reviewed the ingredients and manufacturer claims of 11 ocular nutritional supplements on the companies' consumer information websites; the ingredients were compared with those contained in the AREDS and AREDS2 formulae.

Main Outcome Measures: Proportion of ocular nutritional supplements that contained the same ingredients, in the same doses, as the AREDS or AREDS2 formula; proportion of nutritional supplements with unsubstantiated claims made by the manufacturer.

Results: All of the ocular nutritional supplements contained the ingredients from the AREDS or AREDS2 formula; 36% (4/11) of the supplements contained equivalent doses of AREDS or AREDS2 ingredients; 55% (6/11) included some information about the AREDS on their consumer information websites.

Product descriptions from 4 of the 11 supplements (36%) stated that the supplements were important to maintain general eye health; none of these supplements duplicated the AREDS or AREDS2 formula. All the individual supplements claimed to "support," "protect," "help," or "promote" vision and eye health, but none specified that there is no proven benefit in using nutritional supplements for primary prevention of eye disease.

The Study Conclusions and What You Can Do

The authors conclude that "The majority of top-selling ocular nutritional supplements did not contain the identical ingredient dosages of the AREDS or AREDS2 formula and had product description claims that lacked level 1 evidence, underscoring the importance of ophthalmologists educating their patients on the evidence-based role of nutritional supplements in the management of eye health."

[Editor's note: Level 1 evidence represents research results that address clinical outcomes and meet an extensive set of quality criteria which minimizes researcher bias.]

Talk with your ophthalmologist or optometrist to learn if you could benefit from taking AREDS2 supplements. You can learn more about AREDS2 research at What the Age-Related Eye Disease Studies Mean for You at the National Eye Institute website.

Additional Information

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Do You Have Problems with Light and Glare Sensitivity? Meet Leann Gibson, Who Has Been There Too!

Leann Gibson

Leann Gibson was born and raised in the small community of Wainwright, Alberta, Canada. Leann and her husband Steve are professional chefs who "fell in love over a buffet line," as they like to say. Steve also serves in the Canadian military; thus, says Leann, "Moving is a way of life, so our home is truly where the heart is."

Leann's vision loss journey began in June 2012, when she awoke one morning with a sense that something was "not right" and had seemingly changed overnight. Coincidentally, she was working in an optometrist's office as an optometric assistant at the time. At work later that morning, Leann was overwhelmed by a cascade of visual changes, including cloudy fragments circulating in her visual field, an extreme sensitivity to light, and an inability to distinguish faces.

After many consultations with ophthalmologists and neuro-ophthalmologists throughout Canada and the United States, Leann was finally diagnosed with autoimmune retinopathy in February 2014.

Autoimmune retinopathy is a rare eye disorder in which auto-antibodies damage the retina, causing progressive vision loss. An auto-antibody is a type of protein produced by the immune system that is directed against one or more of an individual's own proteins. It is thought that in autoimmune retinopathies, the auto-antibodies attack proteins of the retina, causing retinal deterioration and disease.

Visual symptoms associated with autoimmune retinopathy include decreased central and/or peripheral vision; night blindness; poor color vision; extreme sensitivity to light; and photopsias, which are shimmering or flashing lights. You can read more about Leann's long and circuitous path to diagnosis at As I was Sleeping on the VisionAware website.

Maureen Duffy: Hello Leann. Thank you very much for agreeing to share your story with our readers. As you know so well, it's one thing to read a description of autoimmune retinopathy, and quite another to actually live with these symptoms, especially extreme light sensitivity. Can you describe to our readers what it's like?

Leann Gibson: The best comparison I can think of would be looking through the static on a television screen. The movement is constant and ever-changing, and my field of vision is encased in strobe-like flashes of light. How well I see very much depends upon how much light is present. Inside my house (which I have fashioned into a "cave"), my symptoms are more subdued. Stepping outside, the world becomes an intense flashing white landscape that is void of color and detail.

MD: It's likely that many VisionAware readers have light sensitivity as well. Can you tell us some techniques and adaptations you've devised to cope with sunlight and glare? And as a Canadian who lives in "snow country," it must also be difficult to cope with reflected light and glare from snow and ice.

LG: One thing for sure is that you cannot escape light, so my most helpful aids are my prescription tinted sunglasses. It would be impossible for me to function without them. The tint of the lenses allows the world to once again have some definition and color – and even the flashing light is muted.

Working as an optometric assistant, I was able to gain first-hand experience with all of the different lens tints that are available. Each color option has varying attributes for a range of lighting conditions. These include contrast, color balance, and the percentage of light that is transmitted through the lens.

The most valuable piece of advice I can give is to find an eye doctor's office (either an ophthalmologist or an optometrist) or a local blindness or low vision agency that has these options and see what works best for you. Don't forget to ask to try them outside in natural light, because you want to be able to evaluate them in real-life conditions.

For me, I find that a gray tint works best for sunny days when glare is at its most intense, versus a brown tint I use on cloudy days because it heightens contrast and helps me see better. Another benefit of the brown tint is how well it works in brightly-lighted stores. Brown helps to diminish glare and isn't so dark that it compromises the visual acuity I have left.

Leann with hat and sunglasses

When I am venturing out on my own, I make sure always to wear a hat with a deep wide brim and carry a small umbrella. Shielding the light from above – whether it is from the sky or inside a store – makes a huge difference for me.

My most recent discovery has been the use of "fitover" sunglasses. My sensitivity to light has increased during the past few months, so even my prescription sunglasses are no longer dark enough. These sunlenses are meant to "fit over" regular glasses, but I figured I would try them over my sunglasses instead. What a difference they made!

By "doubling up" on the tint, I found the necessary relief to continue life outside my home. They come in a variety of colors and styles, and after testing out a few, I found that gray lenses work best for me. I am always on the hunt for "fitovers" and discovered that I can purchase them from almost any retailer that sells sunglasses.

MD: What strategies and techniques have you learned to use for indoor lighting?

LG: It has been a balancing act: learning how to block the natural light coming in the windows and figuring out which lighting fixtures and bulbs work best. I choose fixtures with cream-colored shades that provide a softer light concentration and I use soft white low-wattage bulbs.

In the kitchen and bathroom, I use a 60-watt (or equivalent) frosted spotlight bulb because it shines the light downward without being too harsh. I struggle with having either too much light or not enough light, so I've purchased smaller lamps that I have spread around the house to help even out the dark and light areas. On the flip side, I have night blindness, so for my safety I use nightlights in outlets and keep a flashlight handy.

As far as blocking out my windows, I really like room-darkening blinds and drapes. There are so many size options that I have been able to use them all over the house. For the windows in my front doors, I applied a stick-on window tint that lets in some light but is easier on the eyes.

MD: Have you worked with low vision specialists, orientation and mobility specialists, and vision rehabilitation therapists during the past several years as your vision loss progressed? If so, what did each profession bring to the learning process for you?

LG: I had a low vision assessment and a consult with a mobility instructor at CNIB a few months back. The low vision specialist went over all the tools that could assist me with daily life. It really helped me realize that I could make some tasks easier with the right magnifier, for example.

However, the one that "blew my hair back," so to speak, was a monocular telescope. This device enabled me to see clearly in the distance for the first time in years! I hope to buy one soon.

My time with the mobility instructor was spent outside, testing the monocular and trying different sunlens tints. She gave me some instruction regarding sidewalks and things to pay attention to, such as where the grass ends, because this means a curb is probably coming. This may seem obvious, but when you have a hard time distinguishing the curb, this knowledge can do wonders for your confidence – not to mention your safety.

Afterward, I had an undeniable boost of positive emotion and I didn't feel as alone as I did before. I understood that there were many individuals thriving with vision loss, and if I tried hard enough, I could be one too!

MD: Can you tell us what techniques and strategies you've learned to use for safe outdoor travel? Do you use a cane or a guide dog?

LG: When I plan to go somewhere on my own, I prepare a backpack with a few essentials. It is important to cover all my bases so I feel confident that I can handle whatever comes my way. I always pack extra sunglasses, a wide-brimmed hat, a folding umbrella, my cell phone, identification, and extra cash.

Leann's travel essentials

Leann's travel essentials: a folding umbrella, wide-brimmed hat,
an assortment of extra sunglasses, and a cell phone

One of the biggest lessons I have learned as a visually impaired person is to slow down. So I keep to the inside of sidewalks, away from traffic, and I pay attention to how other people move. For example, I can tell that a significant step-down is ahead or which door to go into if I walk slowly and pay attention. If I come to a busy uncontrolled intersection, I will simply walk down to one that is less busy so that I feel comfortable crossing.

With my photosensitivity, one of the most difficult challenges I face is how long it takes for my eyes to adapt to different light sources and lighting levels, such as going from outside to inside or vice versa. With my photopsia, or flashing light, this symptom goes into overdrive and envelops my entire visual field. As it thunders away, I am held frozen in my tracks.

This poses a significant safety issue, so when I come out of a store, for example, I move to the side, out of the flow of traffic. I close my eyes, take a few deep breaths, and wait until I can recover. Inside the door of my house, I have placed a stool that I can sit on and let the recovery happen.

Leann in the snow

I have found that asking for help is an important tool. Many bus drivers have helped me get where I needed to go! In the winter months it is harder to travel on my own, so I wait for warmer days or when someone can assist me. I find the anti-slip spiked shoe covers work best on snow and ice, and it is so important to wear the proper winter attire.

I learn something each time I go it alone – it is very much a work in progress. As my vision deteriorates, I know I will need to employ the help of a guide dog or cane, but for now I am making my way in the world.

Also, I have come across something that – if it works – may help with my photosensitivity quite a bit. It is called a partial occluder contact lens. The center of the contact lens that covers the pupil is a gray tint that is available in a variety of percentages of light transmission. My doctor is checking it out for me, and I'll be trying them out very soon. I'll be glad to report back to our readers about how this potential solution works out for me.

MD: We look forward to your update, Leann, and we thank you very much for sharing your hard-won expertise with our readers. If readers have additional questions, helpful hints, or resources, please feel free to share them in the comments section.

Additional Information

Low Vision
Personal Reflections
Orientation and Mobility
Getting Around

A Progress Update: the OrCam Wearable Visual System

The OrCam logo

During the past several months, I have received a number of inquiries from readers about the status of the OrCam: A Portable, Wearable Visual System for Blind and Visually Impaired Persons. When the OrCam was initially released in 2013, the parent company indicated that the OrCam would begin shipping 100 units in the fall of 2013, with further production unfolding in late 2013 and early 2014.

That projected schedule has been delayed, however, and readers have begun to question both the company and the product; thus, I took our readers' concerns to the source: Dr. Yonatan Wexler, the head of Research and Development at OrCam, whom I interviewed earlier this year. Dr. Wexler responded promptly and directed me to a progress update on the OrCam blog, which he has given me permission to reprint and distribute (below).

[Please note: This post does not imply endorsement of the OrCam by VisionAware. It is intended only to provide information for our readers.]

First, Some OrCam Background

OrCam is an Israeli start-up company, founded in 2010 by Amnon Shashua, Sachs Professor of Computer Science at The Hebrew University of Jerusalem. The mission of OrCam is to develop a "portable, wearable visual system with 'human-like' capabilities" for blind and visually impaired persons, via the use of artificial computer intelligence and augmented reality.

The OrCam in place on eyeglasses

The OrCam (pictured at left) is based on computer algorithms that Professor Shashua has pioneered with Shai Shalev-Shwartz, a Hebrew University colleague, and Yonatan Wexler, their former graduate student, who is OrCam's head of Research and Development. OrCam also has assembled a team of experienced engineers, most of whom are from elite technological units of the Israel Defense Forces and academia.

The OrCam device is a small camera worn in the style of Google Glass, connected by a thin cable to a portable computer designed to fit in the wearer's pocket. The system clips on to the wearer's glasses with a small magnet and uses a bone-conduction speaker to offer clear speech as it reads aloud the words or object pointed to by the user.

The system is designed to both recognize and speak "text in the wild," a term used to describe newspaper articles as well as bus numbers, and objects as diverse as landmarks, traffic lights, and the faces of friends.

You can read more about the OrCam, including questions and answers about the device, at The OrCam: A Portable, Wearable Visual System for Blind and Visually Impaired Persons.

An OrCam Update

From OrCam Progress Update by Rami Ben Yehuda, Vice-President, OrCam Technologies, via the OrCam blog:

I would like to take this opportunity to share with our current and future users and with all those interested in this unique endeavor some of the progress we have made with the OrCam project over the past year.

Over a year has passed since OrCam was first introduced in the media. The initial response to the concept we introduced was overwhelmingly positive, and the magnitude of excitement caught us un-prepared. We found ourselves facing enormous numbers of inquiries and requests to try out or purchase a device and to conduct various clinical evaluations. Despite the urge to release our exciting new product right away, we decided not to deviate from our plans and continued to develop the OrCam device under the radar as much as possible.

We began with an exclusive group of users with the aim of gaining real-world experience and deeper understanding of the way OrCam was being used. In November 2013 we initiated a Pre-Launch Program in which a limited group of users, who originally signed up on the OrCam website, received their OrCam device. This group included blind and visually-impaired individuals, adults and children.

These early adopters were offered a special introductory price and they became the first users to receive a Pre-Launch version of the device. They also agreed to work with our team to improve the device and were made aware of the list of features, out of the full feature set, that were available at that time.

During this Pre-Launch period, we decided that we would focus on usability and some of the important features our users had identified. By starting with this small user group, we were able to develop personal connections and listen to individuals. We learned from their feedback and worked to improve the device. This direct and meaningful feedback allowed us to immensely improve the device over the course of months of work.

In parallel, we built a support team in the US which includes highly experienced low vision professionals. Our team provides new users with a complimentary one-on-one in-person training session. We also provide ongoing support, and have received very positive feedback from our Pre-Launch users on the high level of service we provide.

The Pre-Launch Program is an internal effort conducted by OrCam and designed to serve as an integral part of the development process. Throughout the past year we have slowly expanded our user base. We have attended a number of public events and provided live demonstrations of the OrCam device to the public.

We elected to participate in an initial independent clinical study conducted by a well-known medical center on the East Coast. OrCam provided devices for this study, and we await the results which will be published independently by the center. We chose to limit our involvement in additional clinical studies or evaluations until we are confident in the performance of OrCam. We want to be sure that we are ready for all potential users and for additional professional evaluations.

We are aware of growing frustration linked to the fact that we have chosen to delay our official launch date, and our decision to not enter multiple clinical evaluations/studies at once. We are confident that the current study's findings will be favorable and help guide us to further evaluations and studies in the future.

We believe in providing a truly unique and innovative solution that will help people. I wish to take this opportunity to personally apologize to our current and future users who have experienced frustration with the lengthy amount of time it has taken us. We also know that the early Pre-Launch version did not include the full list of features we plan to include in OrCam and we would like to assure you that we are still on track with our initial plans and will continue to add additional features over time.

As we gain more knowledge and continue to significantly improve OrCam (both its hardware and software), we are marching closer and closer to an official product launch in the United States, which we anticipate will occur within the next few months. Once we feel we are ready, we intend to launch the OrCam device and make it commercially available to everyone at the launch price of $3,500. Additional regions and languages will follow. All of our Pre-Launch users will automatically receive a complimentary upgrade to the newest version available at the time of our launch.

We are grateful for all the feedback and support from all the people and organizations we have had the pleasure to interact with and those who have helped us improve the solution and bring us closer to the launch date.

I hope that this comprehensive update sheds some light on our formidable progress to date. Thank you for your continued interest and support and for your patience as we continuously strive to deliver an excellent product to you. I would like to re-state our commitment to provide the visually impaired community with the life-changing technology it deserves. We are getting there!

Questions or Comments?

If you have feedback or suggestions for the OrCam team, please feel free to leave a comment.

Assistive Technology
Low Vision
Getting Around

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