Browse By Topic: Retinitis Pigmentosa

Retinitis pigmentosa (RP) is part of a large group of hereditary retinal conditions or dystrophies that cause progressive vision loss. Learn more about retinitis pigmentosa diagnosis and research, as well as other eye conditions that can cause low vision: macular degeneration, macular hole, diabetic retinopathy, cataracts, and glaucoma. You can also find helpful tips and techniques for everyday living skills and safe indoor movement and outdoor travel, along with helpful products and low vision devices. Register to receive alerts and news relating to vision loss, including the latest updates in medical research.

Luxturna, Gene Therapy and Your Inherited Retinal Disease

Caption: Scene as Viewed by Person with Retinitis Pigmentosa In December 2017, news broke to great fanfare that the FDA had approved the first ever gene therapy for a genetic disease. Luxturna (voretigene neparvovec-rzyl) had been proven to restore vision in people living with inherited retinal diseases. Stories about children seeing their parents’ faces for the first time and adults putting away their white canes forever were widely circulated. As a vision rehabilitation specialist, I’ve been approached by clients who ask how they too can become pioneers in the nascent field of gene therapy. It was time to look into

Retinitis Pigmentosa or Choroideremia? Genetic Testing May Be the Only Way to Know

Retinitis Pigmentosa or Choroideremia? by Mary Hiland When Retinitis Pigmentosa (RP) was the diagnosis for me at age 18 in 1963, I had already been through a battery of tests throughout the preceding 10 years. There was one test, however, that was not even suggested. Genetic testing was considered only for the sake of curiosity, not for diagnosis. What difference did it make which side of my family passed it down to me? Who cared? Not me. But if I had been offered the opportunity, I would certainly have wanted to find out if I did indeed have RP or something often misdiagnosed as RP

From Lighthouse Guild: A New Vision Rehabilitation eLearning Program Specifically for Ophthalmologists

How the world can lookwith low vision Low vision and blindness affect a substantial portion of the older adult population in the United States. Although new research from Johns Hopkins University School of Medicine indicates 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, referrals by ophthalmologists to

From the American Academy of Ophthalmology: Eye Doctors Must Learn to Pay Closer Attention to Depression in Their Patients with Vision Loss

At the Annual Meeting of the American Academy of Ophthalmology (AAO) in New Orleans, Louisiana, November 11-14, 2017, Dr. John D. Shepherd, Director of the Weigel Williamson Center for Visual Rehabilitation at the University of Nebraska Medical Center, delivered a powerful lecture on older adults, depression, and vision loss. Dr. Shepherd discussed his own experience living with a chronic illness and pointed to the setbacks

The Reality and Costs of Gene Therapy for Eye Disease: Who Will (or Can) Pay?

As our readers know, VisionAware is committed to providing current and reliable information about eye and vision research that is relevant to adults and older adults, many of whom experience late-life vision loss resulting in low vision. During the past several years, gene therapy has gained traction and offers promise for treating (but not yet curing) a range of eye diseases, including retinitis pigmentosa,

Researchers Continue to Explore the Potential of Human Echolocation and Acoustics for People with Vision Loss

Logo of the AcousticalSociety of America Vision rehabilitation professionals, including Orientation and Mobility Specialists, Vision Rehabilitation Therapists, and Low Vision Therapists, have long been aware of the need to incorporate sensory input, including echolocation, in their instructional programs. Human echolocation describes the ability of humans to detect objects in their environments by sensing reflected sound waves from those objects. Now it appears that acoustic scientists are also

H.R.2050: The Medicare Demonstration of Coverage of Low Vision Devices Act of 2017 Needs Your Advocacy and Support

Dome of the U.S. Capitol The American Foundation for the Blind (AFB) Public Policy Center has announced the reintroduction of federal legislation that seeks to establish a nationwide Medicare demonstration project to evaluate the fiscal impact of a permanent change in Medicare coverage that would, for the first time, provide reimbursement for low vision devices. The AFB Public Policy Center, in Washington, DC, collaborates with policy

Do the Brains of Blind Persons "Rewire" or Adjust to Significantly Enhance the Other Senses? New Research Says Yes

An age-old question that surfaces regularly in my work is this one: "Is it true that blind people develop super senses, like extra-sensitive hearing or touch, to compensate for not being able to see?" A variation of the "super senses" question asks this: "Are the other senses truly enhanced, or do people without the sense of sight – and the input it provides – learn to pay closer attention to information received through the other senses?" Indeed, researchers, scholars, and philosophers have addressed this elusive question for many years: In 1749,

Understanding Our Shifting Health Insurance Landscape – and What It Means for People with Vision Loss

Rebecca Sheffield, Ph.D. Guest blogger Rebecca Sheffield, Ph.D., is the Senior Policy Researcher with the American Foundation for the Blind (AFB) Public Policy Center in Washington, D.C. The AFB Public Policy Center collaborates with policy makers in Congress and the Executive Branch to ensure that Americans with vision loss have equal rights and opportunities to fully participate in society. She also is the author of two important and helpful Public Policy Center publications:

Our Readers Want to Know: What Does It Mean When My Eye Doctor Tells Me I Have "Low Vision"?

Editor's note: One of the many benefits associated with an online information center and website, such as VisionAware, is the ability to track readers' search terms [i.e., information readers are seeking as they search online]. Of particular concern to many readers are issues related to the diagnosis and treatment of low vision, as evidenced by the following searches: I've been told I have low vision, but what does this mean? How is low vision different from blindness? Is there a cure for low vision? An Answer from VisionAware: What

Meet Joseph Fontenot, MD, CVLT: Be Informed and Proactive About Low Vision Services, Protect Yourself, and Always "Buyer Beware"

Joseph Fontenot,M.D., CLVT Dr. Joseph Fontenot is a medical doctor, Certified Low Vision Therapist, and Medical Director of Community Services for Vision Rehabilitation (CSVR), with offices in Alabama and Mississippi. He is also the current Chair of the American Academy of Ophthalmology's Vision Rehabilitation Committee. In that role,

Understanding Low Vision Care and Low Vision Devices: Part 2 in a Series on Low Vision and Low Vision Services by Bryan Gerritsen, CLVT

Guest blogger Bryan Gerritsen is a certified low vision therapist (CLVT) and owner of Low Vision Rehabilitation Services, providing low vision services throughout Utah. He is also the author of An Overview of Low Vision Devices,

There Is Hope; There Is Help: Part 1 in a Series on Low Vision and Low Vision Services by Bryan Gerritsen, CLVT

Guest blogger Bryan Gerritsen is a certified low vision therapist (CLVT) and owner of Low Vision Rehabilitation Services, providing low vision services throughout Utah. He is also the author of An Overview of Low Vision Devices,

Meet Author Irv Arons and Learn More About Gene Therapy and Gene Editing for Eye Disease

Irv Arons is the creator of – and driving force behind – Irv Arons' Journal, an online compendium of the latest information on ophthalmics, medical lasers, clinical trials, developments in stem cell therapy and gene therapy, and emerging drug therapies and treatments for retinal diseases, including age-related macular degeneration. Until his retirement in 2005, Irv was a consultant to the ophthalmic industry for over 30 years, and to the medical laser industry for over 20 years.

Meet Dr. Gislin Dagnelie and Dr. Duane Geruschat: Pioneers in the Study of Restored and Prosthetic Vision

Gislin Dagnelie, Ph.D., is an Associate Professor of Ophthalmology in the Johns Hopkins University School of Medicine and the associate director of the Lions Vision Research and Rehabilitation Center, a division of the Johns Hopkins Wilmer Eye Institute. His work over the last 20 years has been supported by grants from the National Institutes of Health, National Science Foundation,

New Research Explained: Restoring Vision Following Long-Term Blindness: Prosthetic Vision and Considerations for Rehabilitation

During the past several years, there has been much "buzz" in the popular press about the capabilities of the so-called "bionic" eye, described variously as "miraculous," "restoring sight," and "letting me see again." At VisionAware, we have followed the development of "bionic" or "prosthetic" vision closely, avoiding hyperbole and striving to report factual, research-based information about the limitations of restored vision. Now, in this month's edition of the Journal of Vision Impairment & Blindness, two researchers who are pioneers in the study of prosthetic vision analyze the current state of the art in

Our Readers Want to Know: Why Am I Having Visual Hallucinations Along with My Vision Loss?

Editor's note: One of the many benefits associated with an online information center and website, such as VisionAware, is the ability to track readers' search terms [i.e., information readers are seeking as they search the Internet]. Since the earliest days of, and more so during the past year, the following questions appear consistently within our top searches: I'm seeing things that I know aren't there. What is wrong with me? I'm nervous because I see people in my house, but I know they're not really there. Why is this happening? An Answer from VisionAware <img src="" alt="Engraving of Charles Bonnet in profile.

AFB Press Releases New Edition of Making Life More Livable: Simple Adaptations for Living at Home after Vision Loss

by Mary D'Apice, VisionAware Contributing Writer An interview with Maureen A. Duffy, CVRT, Author Making Life More Livable Agencies that provide services to people who are blind or visually impaired offer vision rehabilitation to the 5.3 million Americans over 65 with

New Retinitis Pigmentosa Research: Uncovering the Mechanism Underlying Photoreceptor Cell Death

Researchers from the National Eye Institute and New York University have published new research that implicates the normally beneficial and protective "trash-collecting" central nervous system cells in the accelerated cell death associated with retinitis pigmentosa. Please note that this research is in its earliest stages and has been conducted thus far only with laboratory mice. However, a new clinical trial related to this study, Oral Minocycline in Treating Bilateral Cystoid Macular Edema

New Research: The Argus II Retinal Prosthesis (Bionic Eye) Is Safe, Effective, and Improves Visual Function

New clinical trial results from the Argus II Study Group, an international consortium of eye and vision researchers, confirm that the Argus II, also called the "bionic eye," is a safe, reliable, and effective device that "significantly improves visual function and quality of life for people blinded by retinitis pigmentosa." The latest research, entitled Long-Term Results from an Epiretinal [i.e, "on," "upon," "near," or "against" the retina] Prosthesis

Optogenetics: Can This Innovative Gene Therapy Treat Degenerative Retinal Disease and Possibly Restore Sight?

A research group of Swiss and German scientists has restored vision to mice with a condition similar to retinitis pigmentosa (RP) by introducing engineered light-sensing proteins into their eyes, via a process known as optogenetics. Optogenetics is a still-experimental treatment for a variety of blinding retinal disorders that uses gene therapy to enable retinal and brain cells to respond to light. According to the researchers, "… optogenetic gene therapy, which selectively introduces genes encoding light-sensitive proteins into surviving retinal cells to act as

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

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.

New Research: Patients not Referred for Low Vision Services in a Timely and Efficient Manner

Last month, at the 2014 American Academy of Optometry Annual Meeting, a group of student researchers from the New England College of Optometry presented survey data that identified (a) patient barriers to low vision services and (b) the actions optometrists can take to improve the efficiency of referrals to low vision specialists. Their research revealed a discrepancy between

Newly-Discovered Corneal Stem Cells Could Be a Potential Source for Treatment of Retinal Disease

New research from the United Kingdom has demonstrated that stem cells found in the cornea could provide a source of photoreceptor cells for transplant in persons with degenerative retinal conditions, such as age-related macular degeneration or retinitis pigmentosa. Please note: This "proof of concept" research is in its earliest stages and has been conducted only with laboratory mice. Human clinical trials using corneal stem cells will likely not begin until 2019 or 2020, at

Research in Progress: Making Artificial (or "Bionic") Vision Look More Like Natural Vision

Researchers from the United States and Europe are attempting to improve the quality of artificial vision, such as the images produced by the Argus II Retinal Prosthesis, also called the "bionic eye." Their preliminary laboratory research indicates that electrical stimulation of retinal cells can produce the same patterns of activity (or "natural vision") that occur when the retina views a moving object, including the ability to see shape, color, and depth. From the Journal Neuron The research, entitled

Meet the Vision Institute and StreetLab: Vision Research, Simulations, and Education in Paris

During Vision Research Month, it gives me great pleasure to highlight the work of the Vision Institute of Paris and its subsidiary StreetLab. Both organizations are committed to ongoing vision research, with StreetLab featuring complementary and innovative outreach methods to enhance accessibility, inclusion, public awareness, and education. The Vision Institute of Paris (L'Institut de la Vision de Paris) Located in the center of Paris, the Vision Institute is an interdisciplinary research center that addresses eye diseases, vision loss, environmental modification, and daily living skills through the

Meet Duane Geruschat, Ph.D. and the Argus II Retinal Prosthesis at Second Sight Medical Products

Duane Geruschat, Ph.D. specializes in rehabilitation research with persons who are blind and visually impaired. His primary interest is in low vision orientation and mobility. He is a certified orientation and mobility specialist (COMS) and a certified low vision therapist (CLVT). Dr. Geruschat began his career working at a school for children with multiple disabilities and

Optogenetics: The Next Frontier in Vision Research? The Foundation Fighting Blindness Explains

June is Vision Research Month – a perfect time to highlight the innovative, cutting-edge research programs of the Foundation Fighting Blindness, headquartered in Columbia, Maryland. The urgent mission of the Foundation is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration,

New European Research: Is the Argus II (the "Bionic Eye") Cost-Effective?

A group of European researchers has undertaken an economic analysis of the Argus II Retinal Prosthesis System (also called the "artificial retina" or "bionic eye") to assess the cost-effectiveness of the Argus II compared to standard care for the treatment of retinitis pigmentosa (RP) in Eurozone countries. To date, they have determined that the Argus II is cost-effective and provides quality-of-life health gains, based upon the projected life span of the Argus II, expected to be the lifetime of the user. [Editor's note: The European Union (EU) is a

Researchers in the United Kingdom Create Viable Retinal Cells via Inkjet Printing Technology

Here is some interesting – and startling – scientific news as we enter 2014: Researchers from the University of Cambridge in the United Kingdom have used inkjet printing technology to successfully print retinal cells. The results provide "proof of concept" that an inkjet printer can be used to print two types of retinal cells from adult rats: ganglion cells and glial cells. Ganglion cells are a type of nerve cell that is found in the retina. Glia are non-nerve cells that provide support and protection for neurons in the brain and nervous system. This

A MacArthur Foundation "Genius" Award for Artificial Retina Research

Sheila Nirenberg, Ph.D., is a neuroscientist whose research is focused on the development of alternative approaches to restoring sight after photoreceptor cell degeneration. She is an associate professor in the Department of Physiology and Biophysics at Weill Medical College of Cornell University, where she studies neural coding: how the brain takes information from the outside world and encodes it in patterns of electrical activity. What her work could mean for people with retinal disease, from macular degeneration and

When the Eyes Play Tricks: Charles Bonnet Syndrome Explains Visual Hallucinations in Those With Visual Impairments

Editor's note: Information about Charles Bonnet Syndrome is of major interest to our visitors. It is often misunderstood by people experiencing the visual hallucinations and by professionals. So Mary D'Apice, VisionAware peer adviser, decided to share Dolores's story to enlighten readers. Visual Hallucinations One night, 75-year-old Dolores woke up to find a huge tree growing beside her bed. Dolores is not a character out of a fiction story but one of many individuals who experience visual hallucinations brought on by vision loss. Dolores later learned

The Argus II Retinal Prosthesis ("Bionic Eye") Receives Medicare Approval

On August 15, 2013, Second Sight Medical Products, Inc. announced that its Argus® II Retinal Prosthesis System has been approved by the Centers for Medicare and Medicaid Services (CMS) for both a new technology add-on payment (inpatient setting of care) and a transitional pass through payment (outpatient setting of care) beginning October 1, 2013. You can read the complete announcement at the Second Sight website. The Argus II Implantation Centers In July, Second Sight Medical Products,

In Spain, Researchers Regenerate Retina in Mice: the Laboratory Results

Recently, I learned about a fascinating study in which researchers from the Center for Genomic Regulation (CRG) in Barcelona, Spain have identified a pathway that triggers the reprogramming and regeneration of retinal neurons in the eye; in addition, they have regenerated mouse retinal tissue through cell reprogramming This research is in its earliest stages and has been conducted only with laboratory mice. Nevertheless, the concept shows great promise for persons with retinal disease. The study, entitled

The Argus II Retinal Prosthesis ("Bionic Eye") to Be Offered in 12 US Implantation Centers

Second Sight Medical Products, Inc., of Sylmar, California, has announced that its Argus® II Retinal Prosthesis System, also called the "artificial retina" or "bionic eye," will be offered in 12 implantation centers across the United States to treat patients with severe to profound retinitis pigmentosa (RP). The mission of Second Sight is to "develop, manufacture, and market implantable visual prosthetics to enable blind individuals to achieve greater independence."

A New Low Vision Publication from the Council of Citizens with Low Vision International

The Council of Citizens with Low Vision International (CCLVI) has just published Insights into Low Vision, a compilation of tools, tips, techniques, and research updates for peer advocates, family members, professionals, and individuals with low vision. Here is more information about this much-needed publication from the CCLVI website: CCLVI's new publication, Insights into Low Vision … has articles by 26 authors, all nationally-known specialists in

Updates on the Progress of Clinical Trials for a Retinal Implant for Retinitis Pigmentosa

An updated study, entitled Artificial vision with wirelessly powered subretinal electronic implant has been published online in the February 2013 issue of Proceedings of the Royal Society B: Biological Sciences. Proceedings B is the Royal Society's biological research journal, dedicated to the rapid publication of high-quality research papers. The paper summarizes the results of a nine-subject clinical trial of a functional retinal implant for patients with

Disability Employment and a "Thumbs Up" for Roger Ebert

Guest blogger DeAnn Elliott graduated from the Independent Living program at The Carroll Center for the Blind in 2007 after losing her eyesight to retinitis pigmentosa. She lives in the Boston area with her teenage daughter, their cat, and her guide dog, Emmy, a playful black lab. In Disability Employment and a "Thumbs-Up" for Roger Ebert, which first

The Argus II Retinal Prosthesis ("Bionic Eye") Receives Humanitarian Use FDA Approval

On February 14, 2013, Second Sight Medical Products, Inc. received approval from the U.S. Food and Drug Administration (FDA) for the Argus II Retinal Prosthesis System, also called the "artificial retina" or "bionic eye." The mission of Sylmar, California-based Second Sight is to "develop, manufacture, and market implantable visual prosthetics to enable blind individuals to achieve greater independence." The Argus II has been approved to treat adults with severe to profound

Advancing Laboratory Treatments into Human Studies by Dr. Stephen Rose, Foundation Fighting Blindness

Stephen Rose, Ph.D., is the Chief Research Officer of the Foundation Fighting Blindness, Inc.. The urgent mission of the Foundation is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases. Dr. Rose's essay, entitled "Found in Translation: Taking on the Challenge of Advancing Treatments into Human Studies," appears in the Winter 2013 edition of

Positive Phase III Clinical Trial Results for Totally Blind Persons with Sleep Disorders

On January 23, 2013, Vanda Pharmaceuticals, Inc. announced positive Phase III clinical trial results from the recently completed Randomized-withdrawal study of the Efficacy and Safety of Tasimelteon (RESET) study; in addition, on December 18, 2012, Vanda announced positive Phase III clinical trial results from the Safety and Efficacy of Tasimelteon (SET) study. Tasimelteon is an experimental drug treatment for totally blind individuals with no light perception who experience a sleep problem called "Non-24-Hour Sleep-Wake Disorder." In the United States, this disorder affects approximately 65,000 totally blind

Second Sense Blog "Jalapeños in the Oatmeal" Tackles Emotional Issues with Candor and Charm

It's time for some VisionAware blogroll love once again. As I explained in my introductory "blogroll love" post, ...the VisionAware "blind bloggers" collective is a marvelous way to position my favorite bloggers front-and-center for our ever-growing audience. You'll discover great writing there – and not only about blindness. My favorite bloggers are people who happen to be blind – and who have much to say about life's joys, sorrows, and everything else that makes us human. This week, I'd like you to meet the talented writer and blogger from Jalapeños in the Oatmeal. Jalapeños in the Oatmeal:

Charles Bonnet Syndrome: My Personal and Professional Journey

This past week, I found myself involved in an interesting Twitter discussion about Charles Bonnet ("Bo-NAY") Syndrome (CBS), a condition that causes vivid, complex, recurrent visual hallucinations, usually (but not solely) in older adults with later-life vision loss. The "visual hallucinations" associated with CBS can range from animated, colorful, dreamlike images to less complicated visions of people, animals, vehicles, houses, and

A "Top Eight" List of My Favorite Blog Posts by Joe Strechay

Guest blogger Joe Strechay is the CareerConnect Program Manager at American Foundation for the Blind (AFB). Here's Joe's description of his AFB working life: "I spend most of my time writing about employment, career education, job seeking, and

A New Experimental Chemical Helps Blind Mice See

A new study, published in the July 26, 2012 issue of the journal Neuron, indicates that an injection of the chemical AAQ into the eyes of blind mice can restore light perception temporarily. It also suggests a potential new therapy for persons with blinding retinal diseases, such as age-related macular degeneration and retinitis pigmentosa. In both of these currently incurable degenerative eye diseases,

A New Website from the National Institutes of Health: Clinical Research Trials and You

From a press release from the National Institutes of Health (NIH): The National Institutes of Health has created a new website, NIH Clinical Research Trials and You, to help people learn more about clinical trials, why they matter, and how to participate. From the first cure of a solid tumor with chemotherapy to the use of nitroglycerin in response to heart attacks, clinical research trials – or research studies involving people – have played a vital role in improving health and quality of life for people around the

Follow Us:

Blog Archive Browse Archive

Join Our Mission

Help us expand our resources for people with vision loss.