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"When diagnosed with macular degeneration, no-one told me I may end up seeing things that aren't really there."

"I can't see my daughter's face so how can that butterfly be so large and vivid?"

"I'm legally blind so why am I seeing animals in stunning detail?"

"I didn’t know what was happening to me. Was this the start of dementia?"

"This weird figure appears almost daily but I know it is not real."

Listen to ABC Radio National's CBS podcast on 'All in the Mind'.

Listen to ABC Radio National's CBS podcast on 'All in the Mind'.

"The squares start at the floorboards and rise like blue lanterns."

“Shockingly large”: The true extent of CBS, worldwide

 

A recent paper from Denmark has undertaken the first attempt to estimate how prevalent CBS is in the world. Published in the Annals of Eye Science journal, their meta-analysis concluded that 19.7% (1 in every 5 people) who experience vision loss will develop CBS. They draw upon this percentage to estimate a global figure of 47.2 million people affected by the syndrome.

Perhaps, just perhaps, this sobering finding will be the wakeup call for the health care sector to start to take the syndrome seriously. For far too long CBS has been downplayed and even neglected by a wide range of medical and health care professionals.

In the editorial section of the journal, it states:

“The number of low vision patients that suffer from visual hallucinations is shockingly large… The first step in addressing CBS is the recognition by ophthalmologists that this condition is highly prevalent in our patient population.”

They issue a challenge to ophthalmologists: to ask their patients whether they see things that they know are not really there. They conclude:                                                                                       “The number of patients that may answer your question with a ‘yes’ may surprise you."

 

[Image courtesy of Nick Decorte]

The Foundation welcomes this development as it speaks to the enormity of the situation. The estimate of 47.2 million people affected globally by CBS may even be conservative on two fronts. First, their study only applies to people over the age of 40 and yet we know younger populations are affected. Second, the study suggests 1 in 5 people will develop CBS yet there are many studies indicating that 1 in 3 may be more accurate.

 

REFERENCE:
 
Subhi et al (2022). Prevalence of Charles Bonnet syndrome in low vision: a systematic review and meta-analysis. Annals of Eye Science; 7: 12.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  1. COVID-19 & CBS: Opposing results from two studies
  2. New CBS study in Australia
  3. A young adult's journey with CBS
  4. CBS online survey results (Part II)
  5. CBS online survey results (Part I)

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The Charles Bonnet Syndrome Foundation is dedicated to raising awareness of CBS, what signs to look out for and how to better manage this condition.

As a charitable organisation, we rely principally upon memberships and donations to continue our work.

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