In a recent blog by ophthalmologist and low vision specialist,  Lylas Mogk, MD., she reports that “about 30% of people with vision loss experience Charles Bonnet Syndrome (CBS) for a year or two, in which they see clear, colorful images of people, animals, flowers or buildings, for example, that aren’t really there. The person seeing these is usually aware that the images are not real, as they may be superimposed on their living room wall or appear in the sky.”

Such was the experience of my father-in-law who has wet macular degeneration (AMD).   He would see mothers and children in bright color clothes riding bikes on the side of the road while he was in the car or sitting in his yard.  At first these visual hallucinations alarmed him and he spoke to his primary care doctor and explained that he was seeing these visions.  Unaware of Charles Bonnet Syndrome, she ordered a brain CT scan for him.  On the weekend before the test, he told me about his symptoms.  When I explained that these strange sightings were not uncommon in those with macular degeneration or other vision loss, he felt great relief.  Dr. Mogk goes on to explain, “ It’s important to know that these are not pathological hallucinations; they are just your eyes playing tricks on you, similar to phantom pain, for example, when someone feels like an amputated finger is itching but it can’t be because it’s not there.”

In a recent survey of general practitioners (GPs) by the Macular Society it was reported that 58% of those that responded were aware of the link between macular degeneration and visual hallucination.  And an estimated 20% of GPs  learned about CBS from their patients.  Such was the case with my father-in-law.  I instructed him to have a conversation with his GP about CBS and his symptoms before he had the CT scan in case she wanted to cancel the test.

Thankfully my father-in-law told his doctor about his “sightings” and found great relief knowing that his hallucinations were not from some other serious disorder.  However, that’s not the case for many other patients who suffer in silence afraid of what these abnormal visions might mean.

Dr Waqaar Shah, of  the Royal College of General Practitioners and the UK Vision Strategy Eye Health Clinical Priority Project, commented, “Patients will rarely volunteer this symptom for fear of being judged as having a mental health condition so it is important GPs raise awareness amongst patients so that they can receive appropriate support. “

Learn more about this syndrome so that you can discuss it with someone you know with vision loss or maybe even your GP:

Charles Bonnet Syndrome
Leslie Degner, RN, BSN