What is Charles Bonnet Syndrome?

When someone loses their vision, they could be a risk of suffering from  a condition called Charles Bonnet Syndrome.  This condition causes someone to "see" things that are not there.  These have been termed visual hallucinations which can be in both black.white or colour and can last just moments or hours  These hallucinations can include 

• repeating patterns of lines, dots, or other geometric shapes
• landscapes, such as mountains or waterfalls
• people, animals, or insects
• people dressed in costume from an earlier time
• imaginary creatures, like dragons

Now can you imagine experiencing this and then telling a family member or friend?   Without any knowledge of the condition Charles Bonnet Syndrome, that family member or friend could think you have lost your mind!  Being misunderstood, as you can image, can really make someone feel sad, isolated and hopeless. Often in the case of Charles Bonnet, people suffering don't tell anyone as they don't understand what is happening themselves.  They have not been informed of the condition from their optometrist or ophthalmologist.  They don't want to tell anyone and suffer in silence.

And sadly this is the case of this beautiful lady pictured here, Mrs Bessie Simpson.  

Bessie was my grandmother - my Mamie, as she was called.  Mamie developed wet macular degeneration in one eye years ago when injection treatment options were not available in her rural community in Georgia (USA).  She became legally blind as the other eye was born weak and never saw much.  She lived alone but began seeing things in her house.  She rang my dad in the night to say children were in her house.  Having owned a day nursery for many years, the family thought she was having dementia and recalling memories from her past.  She saw other things as well..some nice..and some not so nice.  Due to the hallucinations and failing eyesight, she was forced to move in with family and in a short time passed away.  

When my grandmother lost her vision, I was a student at the time studying optometry.  While I learned much about wet macular degeneration - causes, treatments and best patient advice - I learned nothing of Charles Bonnet.  And it was only after she passed and I began working as an optometrist in low vision did I learn more about it.  And it is because of my Mamie, that I take extra time with patients suffering vision loss and at risk of vision loss.  I explain to them what Charles Bonnet Syndrome is and what to look out for.  I also advise them to educate their family as well. 

While there is no cure or treatment for Charles Bonnet Syndrome, there may be some things you could do to help when having the visual hallucinations.

• Changing the lighting conditions
• Trying to relax or de-stress if possible
• Close your eyes and then open them again.
• Look up and down, look at the visual hallucinations, look away - try one or all of these

Today marks 16th of November marks Charles Bonnet Syndrome Awareness Day.  If you or someone you know has suffered any vision loss, please read more about the condition at  https://www.rnib.org.uk/your-eyes/eye-conditions-az/charles-bonnet-syndrome/.