Tag: nystagmus

A poster giving details of the MEVU research and an image of a teddy bear wearing green framed glasses.

Parents invited to take part in research

 Sophie Waltl (Bachelor of Occupational Therapy honours student, Australian Catholic University) is assisting with research on a new assessment that describes vision use in children – the ‘Measure of Early Vision Use’ or MEVU.

The research team are seeking specific feedback from parents / caregivers to understand whether MEVU (which was originally developed for children with cerebral palsy) can / should also be used for children with a visual impairment.

Parents of children with vision impairment aged 0-6 years are invited to complete a short online survey or take part in an online interview to discuss MEVU. The measure can’t be used with children with vision impairment until this stage of the research has been completed.

Click here to find out more and take part

Eye Drops and Medication During Ramadan

During the Holy month of Ramadan, the Muslim community take part in fasting. This means that from sunrise to sunset, there is no eating or drinking (not even water).

How does Ramadan affect eye medication?

During Ramadan people often stop putting in eye drops (such as Glaucoma medication, antibiotic drops and lubricant drops) as it is believed this would be breaking fast. The reason people believe this would break the fast is that drops put in the eye can sometimes seep through a passage from the eye to the back of the throat. Once someone stops taking medication or eye drops during Ramadan, often they do not start taking them again as they do not notice an impact. 

Why is this a problem?

Stopping medication can be dangerous, especially for those with the eye condition Glaucoma, as daily medication is necessary to lower pressure in the eye. For Glaucoma, lowering pressure is the only adjustable treatment which prevents loss of vision, so stopping taking prescribed medication can cause harmful effects. To prevent vision-loss getting worse with Glaucoma, drops must be used exactly as the instructions say. Daily medication also prevents infection and reduces inflammation after any surgery on the surface of the eye.

How to take eye drops without breaking fast

During Ramadan, drops can still be taken twice a day in a way that does not break fast by following these steps:

  • Morning drops should be put in during SEHRI time when fasting begins.
  • Evening drops should be put in during IFTAR time when fast is broken.
  • Press the corner of the eye near the nose for a minute after putting each drop in to prevent it seeping through to the back of the throat. This practice is called Punctal Occlusion.
  • Any eye drops after cataract surgery must be put in at the dosing time advised, but drops can still be taken without breaking fast by using Punctal Occlusion (described above).

Teaching and practicing this simple method during Ramadan is very important to prevent sight loss getting worse and other eye related issues.

This information has been produced by BAME Vision and shared with the Nystagmus Network by Visionary

Captain Tom 100 logo, with an image of Captain Sir Tom showing the thumbs up

Nystagmus Network supporters invited to celebrate Captain Sir Tom’s achievements in special fundraising event


New fundraising initiative over Captain Tom’s birthday weekend of Friday 30 April to Bank Holiday Monday 3 May to celebrate his life and amazing achievements  

Captain Tom 100 invites people all over the world to take on a challenge
based around the number 100 to raise funds for charity 

Following the outpouring of heartfelt messages since the death of Captain Sir Tom Moore on 2 February, his family pledged to celebrate his life with an event that everyone, in the UK and around the world, could be involved in. That event is the Captain Tom 100 and the Nystagmus Network is proud to be inviting our supporters to take part. 

The Nystagmus Network, like many other charities, has been hugely impacted by the Covid-19 pandemic. It’s had a catastrophic effect, with the cancellation of thousands of fundraising events and the loss of billions in income.

Captain Tom 100 offers Nystagmus Network supporters, of all ages and abilities, the opportunity to raise crucial funds for our charity, while at the same time celebrating Captain Tom’s generosity of spirit, the hope and joy he brought to millions, and his sense of fun.

How it works

It’s so simple. All participants need to do is dream up a Captain Tom 100 challenge based around the number 100 and do it at any time and anywhere over Captain Tom’s birthday weekend – starting on Friday 30 April through to Bank Holiday Monday 3 May. 

The challenge could be walking 100 steps or running 100 metres, scoring 100 goals, baking 100 cakes, climbing 100 stairs, hopping 100 laps of the garden, building 100 sandcastles, writing a 100-word poem, flipping 100 pancakes – anything at all, inside or out. 

Once supporters have chosen their challenge, they can fundraise or donate to the Nystagmus Network and share their 100 on social media, using #CaptainTom100 

Captain Tom’s daughter, Hannah Ingram-Moore, said: “We are so grateful for the incredible support we have received since my father started his record-breaking fundraising walk and that his message of hope was shared with the world. Captain Tom was very proud to be able to leave behind the growing legacy of his Foundation. We know he would love the idea of inviting everyone to get involved and share their Captain Tom 100 so that together we can ensure ‘Tomorrow will be a good day’. We look forward to celebrating with you on what would have been his 101st birthday weekend – it’s going to be fun!” 

Sue from the Nystagmus Network says: “We are so grateful to Hannah and the Captain Tom Foundation for this initiative to help beleaguered charities and especially to Captain Sir Tom himself for the hope and inspiration through dark times. We know our supporters will enjoy some wonderfully fun and creative Captain Tom 100 challenges.”

Find out more at CaptainTom100.com 

Join the Captain Tom 100 for the Nystagmus Network here

VMLM image of runners competing in the London Marathon physical race.

Nystagmus Network runners to be part of world’s first 100,000 person marathon

50,000 runners to take on world’s biggest virtual marathon on Sunday 3 October with 50,000 runners to tackle the traditional London Marathon route on the same day

With the results of the 2021 Virgin Money London Marathon Ballot announced recently, the Nystagmus Network has 3 places for anyone who wants to raise crucial funds while making history as part of the world’s first 100,000-person marathon.

Following the announcement that London Marathon Events plans to stage the world’s first 100,000-person on Sunday 3 October, the Nystagmus Network is inviting its supporters across the UK to be a part of it by running to raise funds in its name.  

On Sunday 3 October 50,000 participants will take on the traditional course from London’s Blackheath to The Mall – an increase of more than 7,000 on the previous finisher record – while another 50,000 people around the globe run the 26.2 miles on the course of their choice, anytime from 00:00:00 to 23:59:59 BST, in a virtual event.   

The physical and mental health benefits of being active have been brought sharply into focus during the pandemic, and this biggest-ever London Marathon offers more people than ever before the chance to experience these benefits while raising much-needed funds for charity.  
The Nystagmus Network has THREE places available in the virtual event and is encouraging anyone who was unsuccessful in the ballot to contact them for a chance of taking part.  

Hugh Brasher, Event Director of London Marathon Events, said: “With the national vaccination programme underway, we are delighted to announce our exciting plans for the world’s first 100,000-person marathon. The London Marathon is the most popular marathon on the planet, with a world record 457,861 people applying in the ballot for a place in the 2020 event, and the incredible success of the 2020 virtual event shows the huge appetite to be part of the world’s greatest marathon.”

Nystagmus Network places in the virtual Virgin Money London Marathon are available on a first come, first served basis, but priority will be given to applicants who are members of the charity.
A screen shot of the Nystagmus Network presentation at the VIEW conference 2021

Sue’s at VIEW

The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually.

The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown.

Sue’s virtual presentation on nystagmus in the classroom is exciting lots of comment and discussion online among delegates. Some of the topics they’re talking about are exams arrangements, work sampling and how to mitigate against potentially disruptive behaviour.

You can find information for parents and teachers in our searchable Education Resource HUB here

A labelled diagram of the muscles in the human eye

What is nystagmus?

For a back to basics, plain English guide to childhood nystagmus, visit the new Gene Vision website.

The Nystagmus Network contributed to the content to make sure that people diagnosed with nystagmus, their families and the people who care for and support them would have a clear understanding of the condition.

Visit the ‘nystagmus for patients’ section of the Gene Vision website here

An adult is having her eyes tested.

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia.

Patsy’s story, a case study of AN and Oscillopsia

Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the research work led by Professor Chris Harris at Plymouth.

We will share the case study documents with this group as soon as we can.

The Nystagmus Care Pathway

Following a recent meeting of NUKE (Nystagmus UK Eye research group), there was a brief update on progress with the  Nystagmus Care Pathway. We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon. Sadly, these will not yet encompass AN in adults and children, but the plan is to make this NUKE’s next focus, with the support of colleagues in neurology.

Treatments

There was more discussion of drug therapies available. Baclofen, Memantin and Gabapentin are the most commonly offered drugs. These are all muscle relaxant types. Some people find them effective, for both AN and CN, whilst others find the side effects compound their symptoms of nausea or dizziness.

There are now two members of the group being treated with Fampyra (fampiridine, also known as aminopiridine). Each is experiencing slightly different, though generally beneficial effects. This treatment remains on trial and unlicensed in England.

Those wishing to be referred to Moorfields Eye Hospital, London where our two friends are under the care of Maria Theodorou, must make a request for a referral through their GP.

Gmail group

Attendees were offered the chance to join a Gmail group for adults living with acquired nystagmus and oscillopsia so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite them to future meet ups and keep them posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for adults living with AN and Ocillopsia. It’s there for you to help you connect with others.

Adults chat together

Notes from the February Forum for adults with congenital nystagmus

Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus.

ECLOs

Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Care Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at [email protected] if you need help finding your ECLO.

The Nystagmus Care Pathway

Thank you for sharing your thoughts on the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.

CBS

There was some discussion of Charles Bonnet Syndrome, where people with limited or failing sight experience hallucinations as their brain appears to be trying to make up for the lack of clear images coming in through the eyes. Some people with nystagmus, especially if they also have other eye or neurolical conditions, experience CBS. Talking about the ‘visions’ openly and rationalising them can help alleviate the symptoms. Please see Esme’s Umbrella for more information and support.

Laser surgery and ICLS

The Nystagmus Network does not recommend the use of laser surgery to correct refractive errors (short sight) in people with nystagmus from non NHS providers.

We are aware of a case where a patient with nystagmus has successfully undergone intracorneal lens (ICL) implantation in New Zealand but understand that this treatment remains at the trial stage and is not widely available.

Gmail group

Those attending were offered the chance to join a Gmail group for adults living with congenital nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite you to future meet ups and keep you posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for adults. It’s there for you to help you connect with others.

A woman and child embrace.

Notes from the February Parents’ Forum

Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum.

Homeschooling

Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time.

We loved the suggestion from one parent about using face time for parallel lego play with a friend or story time with grandparents instead of using it for online games.

We also had a quick insight, thanks to one of our members, into full time, permanent home education, as opposed to homeschooling in a pandemic.

ECLOs

Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support the whole family and where to find them. Please contact Ian at [email protected] if you need help finding your ECLO.

ADHD and Dyslexia

There was some discussion about ADHD and nystagmus and whether there may be a link. There is no known link, and the likelihood of a child with nystagmus having ADHD is no greater than for any other child. Children with nystagmus are sometimes mistakenly thought to have ADHD because of some of the characteristics typical of nystagmus (inability or unwillingness to maintain eye contact, or a child unable to access their work, for example). If in doubt, a proper test should be commissioned.

Similarly with dyslexia. Children with nystagmus can struggle to read at first because of the phenomenon known as visual crowding (the inability to pick out individual letters or words from a page) and difficulty in scanning from line to line. Both of these are caused by the eye movements. They can be overcome using a card, ruler or Typoscope to keep focus on a single word or line of text at a time.

There was a question about photosensitivity and nystagmus. There is a definite connection in many cases. The advice is to protect the eyes as much as possible from bright lights, glare and reflected light, using curtains, shades and blinds and wearing peaked caps, wide brimmed hats or sunglasses indoors and out – and also especially in the car – as a precaution.

The Nystagmus Care Pathway

Thank you for your helpful contributions to the work we are putting together towards the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.

Gmail group

Parents were offered the chance to join a Gmail group for parents of children and young people with nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact parents via this group to invite you to future meet ups and keep them posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for parents. It’s there for you to help you connect with others.

Diagrammatic representation of a typical circadian rythm.

Circadian Therapeutics Sleep Health Survey

Circadian Therapeutics are seeking vision-impaired individuals between 18 – 70 years to participate in a research project exploring experiences of sleep and daily rhythm disruption.

In partnership with the Blind Veterans UK, Circadian Therapeutics is running a survey to identify sleep and circadian disruption experienced by vision impaired individuals. The purpose of this work, first launched in March 2020, is to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption. The research team are now seeking more participants.

The aim and purpose of the survey:

Sleep and biological daily rhythms (circadian rhythms) are essential to maintaining the healthy balance and functioning of the mind and body. Our master internal circadian clock coordinates our body’s daily physiological and behavioural cycles to the Earth’s solar day – including daytime alertness and sleep timing, to synchronization of changes in hormone secretion, to fluctuations in mood and cognitive ability.

Sleep and circadian rhythm disruption (SCRD) is widely experienced in our communities, with the scope of the problem often underreported. Common suffers range from teenagers, new mothers and shift workers, to individuals with depression and the severely Vision Impaired, and is an underlying feature in many of the most challenging diseases of our time, including cardiovascular disease, cancer and neuropsychiatric diseases.

The Sleep and Circadian Health Survey

The aim of this survey is to identify sleep and circadian disruption experienced by Vision Impaired individuals in order to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption.

Taking Part

The link below provides interested individuals with a simple method to register their interest in the Online Survey and how to find out more about the study. The Survey can be completed at home or by telephone. 

Register your interest in the Online Sleep Survey here