nystagmus network – Page 18 – Nystagmus Network

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

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.

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.

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

3 children reading a book together. They are all wearing Nystagmus Network T-shirts.

Looking forward to 20 June

We’re launching something BIG for Nystagmus Awareness Day 2021

But first, a question. Who’s your favourite children’s author?

David Walliams? Eva Ibbotson? Onjali Rauf? Eoin Colfer? Malorie Blackman? Adam Blade? J K Rowling? Jacqueline Wilson?

Please contact us with the name your child’s or your favourite children’s author

THANK YOU

2 runners wearing Nystagmus Network show their medals after comleting the Royal Parks Half Marathon

Free run places available

Would you like a FREE RUN PLACE in the Royal Parks Half Marathon?

On Sunday 11 April 2021 the Royal Parks Half takes place for runners in their community. Track your 13.1 miles in your local area. This will be an unparalleled digital experience which mirrors as much of the in-person race as possible, including a premium race pack, sights and sounds from the beautiful course (from industry-leading augmented reality), leader boards and that much needed support from fellow runners and spectators.

You will be required to fundraise a minimum amount of £175 for the Nystagmus Network.

To apply for your free place please contact us

Introducing Ian

Ian Springett joined the Nystagmus Network staff team in January 2021.

Following a career in public service, most recently as an ECLO (Eye Care Liaison Officer) and Complaints Officer with the NHS and before that serving as a Police Officer for 30 years, Ian has settled quickly into his new role with the charity as an Information Support Officer.

Ian’s first 3 months with the charity are funded by a grant from Pears Foundation and is part of Government’s £750m charities package, granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.

The Nystagmus Network is grateful to Pears Foundation for their philanthropic support.

We’re back!

Nystagmus Network woolly nystagmus mascots are now back in stock in our online shop.

Dressed in warm woolly hats and scarves, each mascot has its own individual skin and hair colour, nystagmus and a null point.

Thank you to our wonderful volunteer knitter, Lynda.

Order your nystagmus mascot here

Or, if you prefer, you can order a nystagmus onesie mascot.