Charles Bonnet Syndrome: The Eye Condition that Causes Hallucinations

Visual hallucinations, ranging from spots of coloured light to full-bodied people, are, for many vision impaired people, a normal part of their sight loss.  These are symptoms of Charles Bonnet Syndrome (CBS), a recognised medical condition which many people with vision impairment experience at some point during their sight loss journey.  As you might imagine, these sorts of experiences can have a profound impact on people’s lives.  However, Charles Bonnet Syndrome is a condition that isn’t always well-understood even by medical professionals, let alone the general public, and so it often goes ignored or misdiagnosed.

I attended a workshop on the first ever Charles Bonnet Syndrome Day on 16th November this year, and there I heard from several people who have experienced the condition first hand.  Their stories brought home just how serious this condition can be.  Some would see grotesque gargoyle-like figures sitting in their living rooms, while others would see patterns covering the floor and walls to such a degree that they became disorientated and couldn’t tell where anything in the room really was.  While there is currently no known cure for CBS, there are various tricks that people can use to help dispel the images, such as wearing sunglasses, adjusting the light levels of the room, or distracting the brain by turning the TV or radio on or off.

However, for many people the first step in dealing with this condition is to understand what it is that they are experiencing.  We heard several sad stories during the day about people with CBS who had been misdiagnosed with dementia, and had therefore never received the right support or treatment for their condition.  It is important to remember that the hallucinations experienced by people with CBS are vivid, but they are visual only, and cannot be heard, felt, tasted or smelled.  But if this is the case, and there is no serious memory loss and no other diagnosed mental health issue, then the hallucinations are more than likely to be the result of Charles Bonnet Syndrome.

The charity Esme’s Umbrella, which ran the workshop in November, is there to give information, advice and support to anybody who is experiencing CBS, or who is concerned about someone they know who is living with the condition.  They can be contacted by phone (0345 051 3925) or email (esmesumbrella@gmail.com), and they also have a website with details of coping strategies and the latest research on CBS, which can be found at http://www.charlesbonnetsyndrome.uk/.  If you would like to find out more about the condition, then please do not hesitate to contact them.

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Photo of the Esme’s Umbrella Charity logo. Its design includes dozens of colourful umbrellas and the words ‘Esme’s Umbrella. For everyone working for the greater awareness of Charles Bonnet Syndrome’.

Written by Nicola Stokes

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Ray’s Cataracts Diagnosis

At 22 years old, I had just graduated from university. Then, one day during the summer, I started to notice that my sight was becoming blurry, as if someone had placed tracing paper over my eyes. I didn’t think much of it at first because I thought my eyes were ‘playing up’. I tried using eye drops to see if the blurriness would disappear, but this didn’t seem to improve my sight at all. I began to find it difficult to read books and see bus numbers from a far.

After getting very frustrated that my sight wasn’t returning to normal, I decided to go to my local opticians in Shadwell. I’ve known my opticians, Mr Patel, ever since I was a young boy. I trusted him to tell me if there was anything wrong with my eyes. He was concerned to hear the ongoing issues that I was experiencing with my sight, and reassured me that he would fully investigate.

When Mr Patel took a look at my eyes he immediately noticed there was something different with them. I remember him saying to me “Raymond you have cataracts”. I had mixed emotions running through my head, mostly shock and surprise. I thought cataracts could only affect the elderly. I asked Mr Patel if I was going to lose my sight. He told me that I shouldn’t worry as my cataracts were at an early stage, and all I needed was an operation on both eyes to remove the cataracts.

As my mum was also present during the appointment, Mr Patel spoke to us both about what must be done next to treat my cataracts. He advised me to go to my GP so they can make a referral for me to see the Ophthalmologist at my local eye hospital.

Over the upcoming months, my cataracts rapidly progressed and I could no longer see out of both eyes. I had to rely heavily on my family and friends for mobility. In 2013, I had cataracts surgery on my right eye.

Cataracts is an eye condition related to aging, and is the clouding of the lense. The World Health Organisation says that 51% of worldwide blindness is caused by cataracts – a figure that equates to around 20 million people. Although, cataracts is related to aging having diabetes can also increase the likelihood of developing cataracts at a younger age.

For more information about cataracts visit: https://www.edinburghclinic.com/blog/cataract-facts/

Lastly, I hope that my blog article has helped to emphasize the importance of having an eye health check-up, at least once every two years, regardless of your age.

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National Eye Health Week poster which says, “13.8 Million UK Adults are at risk of avoidable sight loss because they fail to have regular sight tests”

Written Ray Calamaan

Bhavini’s experience trying out the OxSight Smart Glasses

Recently, I’ve had the pleasure of trialling out smart glasses, which are being developed by technology company OxSight.

Partial sight is required in order to benefit from wearing the glasses. I live with an eye condition called Retinitis Pigmentosa which means I have no useful vision in one eye and less than 1% in the other eye, in addition to also having Cataracts in this eye. Therefore, I was in doubt whether the glasses would work for me.

However, after a quick demonstration on how to use them, I tried them on and I immediately noticed the massive difference wearing the glasses made to my vision. I was able to see my surroundings, including a television screen, and a man walking into the room and sitting in the chair opposite from me. Also, wearing the glasses outside, I could see the contrasting colours of the pavement and roads. I even noticed some people whizzing past on bikes, as well as identify lampposts which I wouldn’t normally see unless they were detected by my cane.

I was very ecstatic and thrilled that the glasses could help me see again. Moreover, I felt delighted to be able to see my wall clock at home, which I haven’t done in over 4 years when my vision began to rapidly deteriorate.

In my honest opinion, I believe these glasses will greatly assist partially sighted people. These glasses have various settings to cater to different visual impairments. For example, changing the colours to black and white, or switching to use inverted colours. However, the glasses are slightly heavy, and you do feel the weight if you were to wear them all day. Also, the battery pack which is attached to the glasses overheats quickly.

Other slight issues, which I’m sure will be fixed in the final model, are firstly, it is difficult to use when reading printed material as text appears blurry. And secondly, if you’re looking at a group of people, the glasses sees one very large person instead.

Overall, the glasses do take some getting used to, but they are a great help. I’m looking forward to trialling them out in social environments, like walking to my local shop and navigating through the aisles and seeing if I can identify products. I’m also really interested to try them whilst trying to make a cup of tea with them and other daily tasks.

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Photo of Bhavni Makwana wearing the OxSight Smart Glasses.

Check out the video below where you can see me trialling the glasses!

For more updates and to follow my journey using these glasses, please visit my Facebook page ‘RP Awareness & Fundraisers’ by Bhavini Makwana by clicking on the link below. Thanks!

https://www.facebook.com/rpawarenessandfundraisers/

Written by Bhavini Makwana

Living with Aniridia

What colour are your eyes? Are they blue, green, or brown? It’s something most of us take for granted. But for me it’s not that simple.

My name is Glen, I’m 33, and I have a rare condition called Aniridia. This means I was born without irises, so I don’t technically have an eye colour. Aniridia affects just 1 in 47,000 people, and to mark the first ever Aniridia Day on 21st June 2017, I’d like to tell you a bit about how it affects me.

The iris has an important job. It adjusts the size of the pupil to control how much light enters your eye; they will shrink in bright light to allow less light, and expand in the dark to allow in more light and help you see better.

Without an iris, my eyes are very sensitive to glare and brightness.  On cloudy days I wear sunglasses because there can be glare coming off from things like clouds, walls, and windows. And it gets worse if the sun reflects of rainwater or if I’m feeling tired or unwell.

Similarly, computer programs often have white backgrounds, which also cause glare. So I invert the colours to give me white text on a black background, which I find a lot more comfortable. I then flip it back to normal when looking at photos or videos, or else they look weird!

Additionally, I also have to be careful when I’m going into a dark room. I may have to hold on to another person or wait a few minutes until my eyes adjust to the level of light available in the room.

Living with aniridia hasn’t stopped me from living my life though. I’ve graduated from university and I’ve been working in my job for over 12 years. I also love travelling and socialising. Furthermore, since I moved to London last Christmas, I’m having a great time exploring the city and making new friends – including the very welcoming members of East London Vision, and I’m involved with Aniridia Network UK as well. So I’m happy and comfortable, and the future looks bright as long as I wear my shades!

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Photo of Glen and a tour guide at the Natural History Museum holding a piece of zebra fur, during a trip to the museum in April 2017.

You can find lots more about my visual impairment and the things I enjoy at the following links:

Blog – www.welleyenever.com

YouTube – https://www.youtube.com/channel/UCv7AcWqn3r_HxQRAtxVe5Fg

Twitter – https://twitter.com/well_eye_never

Instagram – https://www.instagram.com/welleyenever/

Thanks for reading!

Written by Glen Turner