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CHARLES BONNET SYNDROME

"I see things that are not there, and cannot see the things that are."

William S. Herr, retired psychologist, blind from wet Macular Degeneration

These ‘things’ may be described as hallucinations, phantom visions, ghosts, apparitions, spirits, ‘dreaming with your eyes open’ or “seeing things others don’t see”.  I experienced these unusual images for 3 years before learning the name “Charles Bonnet Syndrome”.  Those three words opened a world of information for me on the internet.  It is our objective to spread the word about this side effect of low vision and relieve the fear and embarrassment of other sufferers with the knowledge “THIS IS NORMAL”.  CBS is not a precursor of any mental disorder or dementia.

These fantastically ‘absurd’ images may include elaborate geometric shapes, swirling colors, changes in topography, people, animals, living creatures and flora of all sorts, having incredible detail beyond that imagined by a sighted person.  They are often described as fascinating, amusing, entertaining, ‘popping’ in and out of the visual field, not representative of anything previously seen, with and without motion like a silent movie—never with sound.  They may last a few minutes or longer, popping in and out of your vision, without warning or control.

When this image first appears you may fear you’re ‘losing your mind’ or perhaps someone is pulling tricks on you. You are reluctant to tell anyone for fear of negative consequences such as psychiatric referral or those around you thinking you are going crazy!  You don’t want to worry your loved ones.  After all, these ‘visions’ are quite strange. 

If only someone had told you and your family this occurs IN NORMAL PEOPLE with vision loss BEFORE IT HAPPENED TO YOU! How relieved you would have been and how in control you could have felt with the knowledge “I AM NORMAL—this must be the Charles Bonnet Syndrome they told me about!” You would be more comfortable with educating others by sharing your experiences.

Charles Bonnet, Swiss naturalist and philosopher, documented the ‘visions’ of his grandfather in 1757.  His writings were found in the 1930’s and introduced to the English speaking psychiatric literature in 1982.  Most low vision and medical professionals are not aware of Charles Bonnet Syndrome. It occurs worldwide, You can help change that. 

It is estimated that up to 40% of the low vision/blind community may be affected, but are reluctant to tell anyone.  It occurs worldwide, in all cultures and age groups.  The cause of vision loss can be for a variety of reasons, but CBS only occurs in people who have once had sight and lost it.

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