Tag: Lighthouse.org

Charles Bonnet Syndrome (phantom vision)

Cynthia A Lockley on

Here are two informative articles about phantom vision, which affects between 10 and 40 percent of people with low vision.

The first article comes from an article in the Lighthouse International's Sharing Solutions newsletter, February 2004, on page 5: "I See Purple Flowers Everywhere: The Many Visions of Charles Bonnet Syndrome" (182 Kb .pdf) by Lylas G.Mogk,MD, and Marja Mogk, PhD; with Carol J. Sussman-Skalka,CSW, MBA.

Do you ever see things you know are not there but look real anyway? It's a common side effect among people with vision impairment. While we refer to it as "phantom vision," the technical term is "Charles Bonnet Syndrome." If you've experienced this, rest easy. Your mind is fine. It's your eyes that are playing tricks on you.

What Exactly Is Charles Bonnet Syndrome?

Charles Bonnet, an 18th century Swiss naturalist and philosopher, is credited as the first person to describe the syndrome. Like his grandfather, who had low vision and saw men, women, birds and buildings he knew were not there, Charles experienced similar phantom visions when his own vision deteriorated.

One explanation compares this condition to phantom limb experiences. People who have a limb amputated may still feel their toes or fingers, or may experience itching on an arm that is not there. This happens because the limb's nerves are still active and sending signals to the brain, which the brain interprets as sensations from the missing limb. Similarly, when retinal cells become impaired and are no longer able to receive and relay visual images to the brain, the visual system begins firing off images on its own.

Often, these images are not related at all to a person's life. Sam, who has macular degeneration, said, "I see little monkeys with red hats and blue coats playing in the front yard." Sam had no doubt that the monkeys he saw were not real ones. As a result, he wasn't concerned about his mind. However, he was worried about what others would think, so he kept it to himself…

Lighthouse.org—Home > About Us > Newsletters and Publications > Sharing Solutions > Fall 2004 > Purple Flowers

The article continues on to explain the percentage of people who may be affected by Charles Bonnet Syndrome and that it is not a psychiatric problem. The article describes some of the images seen that patients have reported.

A majority of people do not find their phantom vision disturbing, probably because the images they see are amusing, pleasing or entertaining.…

This article is based on, and includes quotes from, a chapter in Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, written by Lylas G. Mogk, MD, and Marja Mogk, PhD, published by The Ballantine Publishing Group (2003).

This article appeared in Sharing Solutions – Fall 2004 Edition

The second article describing Charles Bonnet Syndrome comes from "Flashes and Paisley Prints" by Kate Chamberlin. Kate’s personal blog documents her "life and times as a writer who happens to be blind". Kate also experienced hallucinations during the 1980s while she was going blind.

For more of Kate's writing, see Kate's Blog at http://katechamberlin.com/.

Sight / Vision Loss Resources

Cynthia A Lockley on
  • About Glaucoma from the BrightFocus Foundation. Learn about some of the promising areas of glaucoma research that we are currently funding. BrightFocus Foundation is a nonprofit organization supporting research and providing public education to help eradicate brain and eye diseases, including Alzheimer's disease, macular degeneration, and glaucoma. We are working to save mind and sight.  Updated
  • ADA Guide for Places of Lodging: Serving Guests Who Are Blind Or Who Have Low Vision
  • All About Vision provides patient information about vision
  • American Council of the Blind The American Council of the Blind (ACB) was founded in 1961 but many of its state affiliates and local chapters have a history that can be traced back to the 1880s. Since its inception, ACB and its affiliates have been at the forefront of the creation of policies that have shaped the opportunities that are now available to people with disabilities in our country. ACB has also effectively collaborated with Vision Rehabilitation Service providers to develop the principles and values that should be at the heart of providing adjustment and placement services to people who are blind.
  • American Foundation for the Blind (AFB) As a national nonprofit with offices in five U.S. cities, the American Foundation for the Blind (AFB) is a leader in expanding possibilities for the more than 20 million Americans living with vision loss. We champion access and equality, and stand at the forefront of new technologies. Our award-winning programs directly address the most pressing needs of people with vision loss and their families. Like Helen Keller, AFB's most famous ambassador, we are committed to creating a more equitable world for people with disabilities. From infancy to education, career, and retirement, AFB is there to help at every stage of life.
  • American Printing House for the Blind The American Printing House for the Blind (APH) is the world's largest nonprofit organization creating educational, workplace, and independent living products and services for people who are visually impaired.
  • Armor-Tile provides detectable warning and wayfinding solutions for the visually impaired.
  • "Bibliography for Performance Systems Technology (PST) and Computer-based Instruction (CBI)" published in the ACM SIGDOC Journal of Computer Documentation (JCD) [The JCD is no longer being produced. ACM SIGDOC members are able to get copies of archived journals.]
  • Blindness and vision impairment Fact Sheet from the World Health Organization (WHO)  Updated
  • Blindness and Visual Impairment Resources Lensshopper.com is an independent information website about contact lenses, not affiliated with any retailer or distributor.
  • Canadian National Institute for the Blind
  • Charles Bonnet Syndrome Foundation for phantom vision
  • Columbia Lighthouse for the Blind (Washington, DC). Since 1900, Columbia Lighthouse for the Blind has been dedicated to helping the blind or visually impaired population of the greater Washington region overcome the challenges of vision loss. Our work enables people of all ages who are blind or visually impaired to remain independent, active and productive in society. Columbia Lighthouse for the Blind’s (CLB) programs and services include training and consultation in assistive technology, employment marketing skills training, career placement services, comprehensive low vision care, and a wide range of counseling and rehabilitation services.
  • Journal of Visual Impairment & Blindness is the essential professional resource for information about visual impairment. The international peer-reviewed journal of record in the field, it delivers current research and best practice information, commentary from experts on critical topics, news, and events.  Updated
  • Leber Congenital Amaurosis, Type I; LCA1 (congenital retinal blindness) from the Online Mendelian Inheritance in Man (OMIM) database, Johns Hopkins University. Leber congenital amaurosis comprises a group of early-onset childhood retinal dystrophies characterized by vision loss, nystagmus, and severe retinal dysfunction. Patients usually present at birth with profound vision loss and pendular nystagmus. Electroretinogram (ERG) responses are usually nonrecordable. Other clinical findings may include high hypermetropia, photodysphoria, oculodigital sign, keratoconus, cataracts, and a variable appearance to the fundus (summary by Chung and Traboulsi, 2009).
  • Lighthouse International Lighthouse International "is a leading non-profit organization that helps people of all ages who are at risk for, or are experiencing, vision loss."
  • Media Access Group at WGBH develops and distributes captioning, video description, and MoPix means of access to movies and television for viewers who are deaf or hard of hearing
  • National Captioning Institute provides services to deaf, hard of hearing and other people who, for whatever reason, wherever situated and irrespective of their economic conditions, are limited in their ability to participate fully in the world of communications, heard, seen or written.
  • National Center for Accessible Media (NCAM) of CPB/WGBH is a research and development facility dedicated to the issues of media and information technology for people with disabilities in their homes, schools, workplaces, and communities.
  • National Federation of the Blind
  • NIH National Eye Health Education Program For more than 50 years, the National Eye Institute (NEI) has been on the front lines of vision research — and we continue to support cutting-edge research projects that investigate new ways to prevent, treat, or even reverse vision loss. We also work hard to help the public learn about vision problems and how to keep their eyes healthy.  New
  • Ray Charles: Trailblazing Artist and Advocate (1930-2004) tribute by Brent Hopkins, Journal of Visual Impairment & Blindness, July 2004, Vol. 98 Issue 7, p439. The tribute describes how Ray Charles was an example of how blindness need not prevent one from leading a full, productive life.  Updated
  • VisionAware – Resources for Independent Living with Vision Loss
  • Vision Australia – blindness and low vision services in Australia. A comprehensive site with many useful resources.
  • Visual Disabilities from WebAIM describes the types of vision disabilities: blindness, color-blindness, and low vision.
  • Vision Rehabilitation: Helping People with Low Vision (.pdf), NIH National Eye Health Education Program.  New