Primer on Charles Bonnet Syndrome

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Charles Bonnet (pronounced “bon-nay”) was a naturalist and philosopher born in Geneva in 1720. At around 40 years-old, he released a book called “Essai Analytique sur les Faculties de L’Ame” (Analytical Essays Concerning the Faculties of the Mind) in which he described how his 87 year-old grandfather, Charles Lullin, experienced visual hallucinations that occurred at spontaneous times.

Fast forward to 1967, the term “Charles Bonnet Syndrome (CBS)” was introduced to the world by another Geneva native, George de Morsier.

CBS can be described as the presence of visual hallucinations among those with sight loss. These hallucinations are completely the product of visual impairments and are not signs of mental health deterioration.

There are generally two main types of hallucinations experienced:

  • Simple patterns and shapes, like brickwork or mosaic
  • Complex images of people, landscapes, or objects

These will only affect a person’s sight. Smell, hearing, and touch will not be compromised.

The reasons behind these hallucinations are not yet entirely clear. It is suggested that when sight loss occurs, the brain no longer receives as many signals from the eyes. It then attempts to make up for this lack of communication by creating its own. These end up translating into “phantom” images seen by the individual.

CBS normally appears in the weeks and months following a big change in sight loss. Fortunately, for the majority of people, these hallucinations get less frequent with time, although reappearance of hallucinations five years after initially starting is a possibility.

One of the most serious aspects of CBS is its unknown nature. Many people who begin experiencing hallucinations are often unaware of its true nature. This can cause fear for both the individual as well as their family and friends, due to visions being taken to be symptoms of mental health issues.

Unfortunately, there is no direct way to diagnose the presence of CBS. Doctors will generally talk to the patient about their medical history and may carry out tests to rule out other causes for the visual hallucinations.

Although no treatment is available, given enough time, CBS can improve over time. It has been found that often simply a better understanding of CBS can help patients cope better as they understand that it is purely a normal result of sight loss rather than anything to do with mental health. In some cases, medication for epilepsy, Parkinson’s Disease, and dementia have been able to help, but due to the possibility of severe side-effects, it is only recommended for those who are seriously affected and under supervision.

There are, however, a few self-help methods that may relieve any hallucinations experienced:

  • Changing lighting conditions, i.e. making it brighter or dimmer
  • Scanning from left to right repeatedly without moving the head for 15 secs. This can be done 4 or 5 times if hallucination continues.
  • Staring at an image and blinking rapidly, or attempting to touch it.
  • Performing a task that includes large movement, e.g. going to the kitchen to make coffee
  • Sleeping and resting well. Fatigue and stress may increase the likelihood of hallucinations.

Blind individuals experience new musical “& Juliet” with OXSIGHT glasses

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Manchester, 9th September, 2019 — Registered blind individuals were given the opportunity to experience the new musical “& Juliet” in Manchester wearing new smart glasses that allowed them to see the entire performance.

Participants with ‘tunnel vision’ also known as ‘peripheral vision loss’ entered a competition to experience the show using new smart glasses technology which allowed them to see the entire musical “& Juliet” before its West End debut. In addition, a further 10 registered blind winners were given an exclusive touch tour which allowed them to feel the props, costumes and meet the cast - followed by the Opera house’s fantastic audio description accessibility option.

Enjoying a behind the scenes experience on the touch tour

Kevin Crompton, 48 from Manchester who has lost 95% of his vision and describes his remaining sight as “looking through pin hole”, commented on the performance “It was very emotional putting the glasses on for the first time in the theatre, usually I wouldn’t be able to see the stage, but I was able to follow the entire story and see the full stage and all of the characters. Sight loss doesn’t mean having to give up on life, it means doing life differently – this is exactly what OXSIGHT are doing for people”.

OXSIGHT teamed up with Opera House Manchester and Henshaw’s to make theatre experiences more accessible for those living with a visual impairment and as part of the World Sight Day 2019 campaign, giving free tickets to new musical.

“When we were asked to be involved our answer was a fervent yes. This is an opportunity where we can support developments in accessibility and change how people can experience live entertainment. Working with OXSIGHT means there’s a chance of breaking down barriers and we are committed to making theatre to be accessible to everyone”, said Manchester Opera House Director, Sheena Wrigley.

Winners settling in for a night at the theatre wearing OXSIGHT glasses

OXSIGHT users have experienced an increased field of view of up to 68 degrees. Many utilise the different modes on offer to enhance their remaining vision and experience sights they thought they had lost forever.

Kirsty Hill from Shrewsbury lost her peripheral vision following a stroke three years ago commented on her experience, “I can’t tell you how much the glasses mean to me, I never thought I would be able to enjoy anything like this properly again. The planning and care that went into looking after all of us and our dogs was so appreciated. The show was an opposite of sensory deprivation, still feel like my hair is standing on end!”

There are more than two million people in the UK living with sight loss that noticeably affects their quality of life. In addition, it is estimated that 250 people start to lose their vision every day.

Hayley Allen, OXSIGHT Customer Care Manager, said: “It’s great to be able to collaborate with Henshaw’s, who do such amazing and important work in supporting the visually impaired. And Opera House Manchester have been brilliant. They’re always working hard to ensure that the visually impaired community feel as welcome as possible.”

Guide dogs and their water bowls at Manchester Opera House

This theatre event marks the first of many partnerships that OXSIGHT and Henshaw’s will be seeking out in order to increase accessibility at cultural venues for the visually impaired community.

Primer on Retinopathy of Prematurity

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The World Health Organisation (WHO) estimates that over 15 million babies are born prematurely (generally agreed to be at less than 37 weeks) every year. This equates to 1.5 times the population of Belgium.

Premature babies are at an increased risk of complications due to the non-optimal gestation period afforded them. If blood vessels in the retina fail to develop fully, babies can be born with retinopathy of prematurity (ROP).

The retina is responsible for taking light that enters the eye and converting it into signals for the brain to interpret. They are supplied with blood through an extensive network of blood vessels that start to develop 16 weeks into pregnancy. Normally, it takes the full term (40 weeks) for the blood vessels to fully develop.

If this process is interrupted, it can leave the retina short of the blood vessels it requires to function properly. In order to make up for this deficiency, it may stimulate new blood vessels to grow. However, these are often weak and can lead to scarring and damaging of the retina. Severe ROP can also lead to retinal detachment.

In the UK, babies born under 32 weeks or at a weight of under 3lbs will be screened for potential ROP. Eye examinations will continue until the risk of needing treatment has passed.

 

Retinopathy of prematurity can be described in 5 stages:

  • In stage 1, the new blood vessels have not started to grow and the mark between where blood vessels are present and not is flat. Usually recovery without treatment is possible at this stage.
  • At stage 2, the mark between the two regions has become raised, but still no new blood vessels have begun to grow. It is still possible to recover without treatment at this stage but regular checkups to monitor the condition are recommended.
  • Stage 3 is normally characterised by the growth of new vessels. These vessels are weak and can lead to scarring which may cause sight problems. Treatment is normally required at this stage.
  • The new vessels that grew have begun to shrink and cause scarring in stage 4. This may start to pull the retina away from the back of the eye.
  • During stage 5 the retina has fully detached and this would lead to permanent sight loss.

 

Treatment for retinopathy of prematurity most often involves the removal of the fragile new blood vessels that grow. This can be done with laser treatment, eye injections or cryotherapy.

If retinal detachment has begun, the patient may require surgery to help hold the retina to the back of the eye. Unfortunately, this needs to be done early during stage 4. If the condition has progressed to stage 5, it is unlikely that useful vision can be salvaged.