Charles Bonnet Syndrome Foundation in Melbourne, Victoria, Australia | Non-profit organisation

Charles Bonnet Syndrome Foundation

Locality: Melbourne, Victoria, Australia

Phone: +61 1300 121 123

Address: c/- Ross House, 247-251 Flinders Lane 3000 Melbourne, VIC, Australia

Website: http://charlesbonnetsyndrome.org/

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• Medical and health
• Non-profit organisation
• Disability service
• Ophthalmologist

23.01.2022 The Australian Broadcasting Commission (ABC) recently broadcast a segment devoted to CBS on Radio National's 'All in the Mind' program. Listen to the personal stories of three vision-impaired Australians plus insights into the syndrome from Associate Professor, Chris Plummer, a neurologist at St. Vincent's Hospital in Melbourne. In promoting the upcoming CBS story, the 'All in the Mind' program states:... "Charles Bonnet Syndrome is sometimes called the 'plaything of the brain' for the blind and visually impaired. The syndrome isn't associated with mental illness or dementia, yet people with it are able to 'see' things - like little wriggling children in paink and white pyjamas, or a goat riding on a bike through their lounge room." To listen to the program, click on the link below. https://www.abc.net.au//a/seeing-when-youre-blind/12503398

21.01.2022 The Charles Bonnet Syndrome Foundation has created a Facebook based community group for anyone who has been affected by CBS, whether that be somebody with the syndrome, friends and family who know someone with CBS, or people who just want to get involved! The community can be used for meeting people, sharing information and developments relating to CBS, getting support or providing support to other members. Please follow our page and join the community for updates, photos, a...nd great conversation with other people! https://www.facebook.com/groups/cbscommunity

16.01.2022 ONLY 21% OF PATIENTS KNEW ABOUT CBS AT THE ONSET OF SYMPTOMS." This was the stark finding of a recent paper from Portugal (Leandro et al, 2020) and replicates similar results stretching back decades. It highlights that there continues to be a lack of forewarning of, and screening for, CBS in both clinical and non-clinical settings. Until such time as this begins to routinely occur, far too many vision-impaired people who develop CBS will be subjected to unnecessary and long...-drawn-out psychological distress. Given the study found that 53% of patients felt reassured or relieved once given the CBS diagnosis, this further emphasises that knowing of the syndrome well in advance can be beneficial. Some leading ophthalmology peak bodies are already recommending screening for CBS at - or soon after - the initial consultation. The Foundation strongly supports this approach. Giving information about CBS prior to the onset of symptoms would go a long way to reducing unnecessary anxiety for the patient.

16.01.2022 PERSON LIVING WITH CBS IN SYDNEY SOUGHT FOR ABC TV ABC TV's flagship science program, Catalyst is filming a new 1hr special hosted by the delightful Lily Serna, mathematician and host of SBS show Letters and Numbers. The program is an exploration of the role of illusion in helping us understand the complex world of human perception. Our visual system is not just like a camera, and in fact we see with our brain, not our eyes.... Part of the program will focus on how our brains created to process a constant stream of data react when that stimuli is removed. This is why we are keen for Lily to meet someone who has experienced the symptoms of Charles Bonnet Syndrome. We would love to have an initial chat with anyone who would be interested in being part of this program, and sharing some of their experience with Lily and the audience. We want to demystify the whole area of so called hallucination, and also to reassure anyone out there who may have experienced something similar that it is a perfectly normal mechanism of the way our brain is wired. If you are interested to find out more, please email Jodie Boehme at Catalyst on [email protected] Alternatively, contact the CBS Foundation on 1300 121 123

16.01.2022 Personal Experience - Ian "I realised I thought I was driving down the hallway of my Grandmother’s house." Ian has experienced CBS for about 14 years and longer with a majority of that time not knowing about what CBS was.... It wasn’t until Ian’s friend who researched about the syndrome was able to advise Ian that he was suffering from not only an illness that affects many millions of people around the world and that he didn’t have to feel alone. It seems that because of the nature of how the illness is affecting people they feel that they shouldn’t need to bother others about their struggles when it comes to CBS. If we could just reach out and listen to people who are suffering from CBS, we can give the support they need to get through this confusing syndrome. How did you or a loved one find out they were suffering from CBS and what has helped you/them through it?

11.01.2022 Dear all, Esme's Umbrella - the UK based CBS organisation - is celebrating its fifth anniversary with an upcoming patient day event to be held online. It will feature a range of speakers and offers a great opportunity for anyone to learn more about the syndrome and current research in the field. The event is to be held on Monday November 16th from 10am to 12.30pm (London time). https://lnkd.in/dUuhk_k

09.01.2022 NEW TREATMENT PILOT STUDY Studies over the past twenty years have shown that people living with CBS have specific cells within the visual region of the brain that are overactive. It is believed that this overactivity is what leads to the generation of phantom images. One of the challenges has been to find ways to lower this firing of cells within the visual brain. Transcranial direct current stimulation (tDCS) is a new electrophysiological approach, which attempts to alter b...rain activity in specific areas of the brain. For CBS, this technique involves introducing a gentle, low-voltage electrical current through two electrodes strategically placed on the scalp. The intention of tDCS is that the weak electrical current can counterbalance the overactivity in the visual region of the brain and thereby limit the possibility of phantom images occurring. PhD researcher, Katrina da Silva Morgan at the Institute of Neuroscience, Newcastle University (UK) in association with King's College in London undertook a pilot study to test tDCS on CBS for the first time. All the individuals in the study were experiencing CBS throughout their waking days. From their small sample, it was found that 66% of the participants noted an improvement in their situation in two ways. First, they reported a reduction in the 'size, movement and intensity' of their phantom visions. Second, it was felt that more of their remaining vision was available to them. These initial findings are promising but will require testing on much larger numbers of people in the future. No adverse side effects seemed to occur in any of the participants of the study, which is a further bonus as current prescribed medications for CBS often come with this risk.

09.01.2022 ONE IN THREE REPORT CBS NEGATIVELY AFFECTS THEIR LIFE For about a third of people, Charles Bonnet syndrome is experienced as unpleasant and stressful. This outcome was recently shared by medical researchers in Portugal (Leandro et al, 2020) and mirrors an identical finding in an English study some six years prior (Cox & ffytche, 2014). It emerged from these studies that such CBS-affected people often feel they have little or no control over what is happening to them. For the... unfortunate one in three, the Bonnet images can: * have a disturbing quality to them (eg. ugly or distorted faces) * be very intrusive (eg. non-stop for hours) * be disorienting (eg. risk of falls) * interrupt one's ability to sleep * further rob the person of their little remaining sight * make everyday tasks more difficult * add to the person's sense of isolation * lead to depression and anxiety CBS is often portrayed as pleasant but a third find the syndrome to be horrid and wish to be rid of it.

05.01.2022 "If I saw somebody in the house, I would probably look at them and say what do you want? If I walked towards them, the images would leave" Joan is an individual affected by Charles Bonnet Syndrome, and has now realised that what she sees isn't real. One of the things she sees are ladies dressed like the 1800's. Increasing awareness of the disease can make it less scary, especially when sufferers don’t know what is happening to them.

04.01.2022 Charles Bonnet Syndrome is unfortunately a condition that often carries a stigma due to many people having misconceptions about the condition, therefore we thought it may be helpful for people to have a space to share their personal experiences with CBS and the times they felt the condition was stigmatised. We would love if you could post a comment below or join our community group to participate in the discussion with others! https://www.facebook.com/groups/cbscommunity

03.01.2022 It’s nothing to worry about. Many people living with CBS are told something like this by their ophthalmologist or optometrist. While the comment has good intentions, it doesn’t quite hit the mark. The vision-impaired person’s greatest fear is that their unusual visual experiences indicate that their mind is completely unravelling. To this end, the comment from the eye health care practitioner is trying to be helpful. And on one level it is. ... But on another, this response underappreciates the sizeable impact the actual syndrome can have upon a person’s life. The symptoms for some can be highly intrusive and even disturbing. At such times, the comment ‘nothing to worry about’ can seem misplaced and lacking an understanding of how harrowing the syndrome can be.

03.01.2022 Personal Experience "It was like holding a fishing net and looking through the holes of a wired fence". Gloria describes one of her visions, and says she would see black and grey through different holes.... #charlesbonnetsyndrome #CBS #visions #CBScommunity #visionimpairment #optometry

03.01.2022 BLIND BUT SEEING THINGS Part II Months passed by and the visions of the girl from a different era persisted. Then, two weeks ago, another strange vision became a regular visitor for Albert. This time it was not a girl or a living thing but what he described as red netting. He noticed that this netting had a slight shimmer and pulse to it and took up about a third of his visual field. Sometimes it seemed almost projected onto white surfaces like his kitchen bench or the livin...Continue reading

02.01.2022 Personal Experience "It was like holding a fishing net and looking through the holes of a wired fence". Gloria describes one of her visions, and says she would see black and grey through different holes.... #charlesbonnetsyndrome #CBS #visions #CBScommunity #visionimpairment #optometry

01.01.2022 UP TO 40% OF PEOPLE WHO EXPERIENCE SIGNIFICANT SIGHT LOSS WILL DEVELOP CBS. This is becoming a reliable figure with several studies stretching back as far as 1995 reporting this finding. If close to 40% within the vision-impaired community are susceptible to Bonnet syndrome, then this translates to monstrous numbers. But these stark numbers are largely being hidden from the general public and the eye health care sector is not adequately pulling its weight. TAKE HOME MESSAGE:... If you or someone you know is living with CBS and you seek assistance, contact your local low vision support service. If they state that they do not offer any such service, then question why this is the case. Request that their organisation be more responsive to the needs of their client base. See more

01.01.2022 SEEING IS NOT ALWAYS BELIEVING We normally trust our vision to tell us what exists out there in the world. This usually serves us exceptionally well in safely and effectively negotiating our surroundings: "See adorable dog... will lunge forward and pat."... "Notice fallen branch on the road ahead... swerve to avoid a collision." It's this wonderful match between what happens within our eyes and brain and the actual world out there. This remarkably faithful mirroring is what sighted people come to rely on. But as vision starts to decline for a person, what is seen is no longer a crisp reproduction of what is out there. Maybe things become cloudy or are drained of their colour. Maybe parts of the visual field are simply lost altogether. This is to be expected when the camera of our mind becomes faulty in some sense. Yet what is not expected at all is when this same person begins to see patterns, objects or figures often in incredible clarity and richness. The interior of the home may still continue to be hard to clearly make out but patches may suddenly spring to life with unexpected form, colour and detail. Sometimes even movement. This is the world of Charles Bonnet syndrome where what we claim to know about vision and reality is turned upside down. This initially poses many questions because seeing is believing, isn't it? That's the natural way sighted people are wired. But what makes this syndrome truly stand out is the person soon comes to understand that what they 'see' doesn't really exist. They are visual phantoms with no substance. And this is why people living with CBS quickly grasp that seeing is not always believing. KEY MESSAGE: If you know someone with sight loss who describes seeing things that are not there, and over a period of time this person continues to claim they are real or to act as if they are, then this could be a red flag. In such a situation, consulting one's doctor for further assessment is advised.