Charles Bonnet syndrome mostly affects the elderly, but hallucinations can also occur in children and middle-aged people.
Roger Cole was 30 years old when he was diagnosed with retinitis pigmentosa. This is a disease, or rather a group of them, characterized by the progressive degeneration of the retina, which little by little loses the cells in charge of receiving light, affecting vision. Today, at 57, he is not completely blind, but he does experience a phenomenon known as tunnel vision, consisting of the loss of peripheral vision. But that has not been the only thing that has happened to him in all this time. He has also been diagnosed with a rare syndrome, known as Charles Bonnet syndrome.
It all started 18 years after his first diagnosis when he began to experience hallucinations. From time to time small flashes or objects floating in front of him appeared in his field of vision. They were not accompanied by any kind of sound, they were simply there. He knew they weren't real, but he could see them clearly. Initially, as with the rest of the patients, it was thought that it could be a mental disorder. However, this ended up being discarded, and finally, in 2014, he was diagnosed with this syndrome, which affects approximately 10% of people with visual impairment.
What is Charles Bonnet syndrome?
The Charles Bonnet syndrome was first described in 1769 by a Swiss biologist in honor of the same name. However, the term clinical did not come into wide use until well into the 20th century.
It affects people with visual impairment, but not complete blindness
It occurs when people with visual impairment, but not complete blindness, experience hallucinations. It has been observed especially in elderly patients, but also in middle-aged people, such as Roger, or even in children.
Hallucinations are very varied, although there are some points in common to all of them. They occur in the field of vision, not inside the head so that patients see them as if they were in their environment. However, they are aware that they are not there. They usually go from lines, polygons or points, to much more concrete shapes, such as flowers, animals, or people. In the case of animal and human figures, they are usually small in size. This is something known as a Lilliputian hallucination, in honor of the literary work of Jonathan Swift. Yes, there is usually variability in the movement, since sometimes they look static and other times they move.
The need for a good diagnosis
Although the first few times can be shocking, they usually normalize quickly and don't usually have a hard time doing it. In fact, in a 1998 study of Charles Bonnet Syndrome in children, the two affected youngsters described the hallucinations as usually interesting and entertaining and rarely as terrifying.
Often mistaken for mental illness
What can be a problem is a stigma attached to hallucinations. Many people continue to suffer, for what they can think about them; although, as Roger has explained, this is something that is changing. "There are not many prejudices in society towards Charles Bonnet syndrome, although more recognition and awareness would be necessary on the part of doctors and health workers, " he says. "There is still a minority opinion that it is more of a mental or psychological condition, which can affect the speed of diagnosis and the necessary care."
In fact, in Roger's case, it took around 3 years to get the correct diagnosis. He did it at the Moorfields London Institute of Ophthalmology, from which several studies have been carried out on this syndrome.
What is the cause of Charles Bonnet syndrome?
Precisely because today there are still many incorrect diagnoses, it is not a well-studied syndrome. This leads to the exact causes of its origin not being known. Although there are some theories.
The most accepted and widespread is the Theory of Neuronal Difference. This affirms that, when nerve cells are lost from the retina, the stimulation of the occipital cortex, which is normally responsible for processing visual information, decreases. To compensate for this, a hypersensitivity of the receptors is generated, which will react to the slightest light stimulus, generating images where in reality there are none.
This is consistent with the fact that the hallucinations of people with Charles Bonnet syndrome become more intense when there are sudden changes in lighting. But it is not the only factor that aggravates them.
The effects of quarantines
Stress has been found to be a major trigger for hallucinations in patients with Charles Bonnet syndrome.
Social isolation can promote hallucinations
In fact, in a study recently carried out by scientists from the Moorfields London Institute of Ophthalmology, it was shown that the situation of quarantines and perimeter closures due to the coronavirus pandemic significantly affected these patients.
Roger himself says that during the closures in the United Kingdom, where he resides, he has experienced much more intense episodes of hallucinations. "I have experienced more extreme cases, both technicolor and panoramic, especially at night."
The authors of the study, in which 45 patients participated, believe that this effect may be a consequence of both the stress caused by social isolation and the increase in a sedentary lifestyle. For this reason, they advise these people that, as much as possible, they carry out frequent physical exercise and promote their social relationships, maintaining safety measures.
In addition to all this, it is important that patients get to know each other and know that they are not alone. Roger Cole through Esme's Umbrella, an association in the United Kingdom, dedicated to raising awareness of Charles Bonnet syndrome, as well as being a meeting point for people who suffer from it.
Roger considers that participating in this campaign has been very enriching for him. "Networking with other people in the same situation serves as both support and empowerment, " he says. "Patients need to know that they are not alone and that support from other people is part of the process."
In short, Charles Bonnet syndrome is not a mental illness, but it has the same stigma as these. Precisely because it gets confused with them. This can lead many people not to ask for help, out of fear or embarrassment. That is why research is important, but also awareness. And, for this, of course, the first step is to make it known.
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