Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).
Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.
Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus examsguide.
There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.
In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.
Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She will be sharing her experiences of school, university and also how she wants to raise awareness of disability to help educate others. Becky has created her own blog and social media accounts, ‘beckys.blurred.perspective’ to help achieve this.
If you’d like to receive an invitation to the get together on Tuesday 21 February from 7.30pm, please email us at [email protected]
RNIB and BlindAmbition present a 16-week series of free weekly webinars to support visually impaired job seekers achieve the next stage in their career: finding a new role, entering employment, starting an apprenticeship, or starting up a new business. The webinars will cover a range of topics from CV writing, different ways to market yourself and interview tips. There are 16 sessions in all. You can join any or all of them. Details of the first 3 below:
Where I’ve come from, where I am and where I am going. The importance of goal setting, why we need it, how to set SMART objectives, determine your objectives, are you on track?
Your input is needed into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities* that were first published in 2013.
Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly. Knowledge from having experienced your own eye health care, or the eye health care of others, is of great value to researchers. The survey feedback will inform the final “Top 10” updated priorities across different eye subspecialties.
The Nystagmus Network is keen to see Paediatric Ophthalmology and Neuro ophthalmology prioritised.
The survey can be accessed via the QR code below, using a Smartphone or other device which connects to the internet:
We need a volunteer to support our use of Donorfy to manage our membership, grant funding applications, income generated from fundraising and donations and interactions with supporters, volunteers and beneficiaries.
Donorfy is implemented. We need it to work for our small staff team.
2 part time members of staff (support officer and fundraiser) will work with the volunteer
Depending on the skills and interests of our volunteer, there is lots of scope for further development of the role
What are we looking for?
Experience and expertise in implementation of a CRM (preferably Donorfy) within a not for profit organisation.
What difference will you make?
Your expertise can help us develop this small charity with huge ambitions to move on to the next level and really have an impact on the nystagmus community.
If you have relevant skills and experience, we would love to hear from you.
You can apply for our voluntary opportunity below.
All volunteer appointments are subject to a DBS check.
We know you will enjoy reading about Carol’s experiences. She thinks of her nystagmus as a quirky trait that doesn’t define who she is and hopes you will find her story encouraging.
I have spent 60+ years thinking this was just a funny and rather unique aspect of being me.
Carol, aged three
I was born in early 1959. My Mother, younger brother and I lived with my Grandparents in Glasgow.
Hold your head straight! Around the age of 7, we got a black and white TV. I would sit on a wooden stool in front of it and get told off for being too close and to “hold your head straight” when looking at the screen. I was unaware that I looked at everything from an angle – holding my head about 45 degrees to the right of my target and with a distinct tilt to my head.
My Mother took me to an Optician who prescribed glasses with a patch over one eye, to correct my “lazy eye”. I was constantly having my head straightened, which put everything out of focus, or made me see double.
At school, I sat in the front row but would often have difficulty reading the blackboard. Arithmetic and Maths were the most awkward as the printed squares in the school jotters were blurred. Neatly entering numbers in those squares required a tilt of the head that had me looking sideways and focusing out of the extreme corner of my left eye.
Glasses didn’t help Teachers, family and the Optician finally agreed the glasses were not solving the problem and, around the age of 10, I was referred to an Ophthalmologist at the general hospital.
The tests involved looking into a strange tunnel-like contraption with moving figures and shapes that I had to line up. Sometimes I couldn’t even see the shapes, because my head was held straight in the machine. They put drops in my eyes that blurred my vision completely for several hours. Despite this I was sent back to school right after the appointment, having been told very little about what was going on, either by my Mother or the Doctor.
Hearing the word Nystagmus for the first time After some time, we had an appointment with the Doctor and I heard the term Nystagmus for the first time. Apparently, it was genetic, although no one else in the family seemed to have the “condition”. The friendly Doctor told me I had “wobbly eyes” and in future, boys would find it very attractive! It would not get better, it might get worse and there was nothing to be done about it.
Can you re-train your brain? At last the glasses were consigned to the bin! I was told to try to look straight ahead and re-train my brain. Little was known about it so, other than people asking me to look straight at them so they could see my eyes dance for their amusement, I just got on with life.
Why are you looking over my shoulder? I left school after Highers, trained and worked as a computer programmer. Back then, code was handwritten – those pesky square boxes again! My way of looking at things was quite natural to me, even if it looked off to others. People who did not know me would ask why I was looking over their shoulder during conversation, or they would turn around to see who else I was looking at! I adjusted my stance so that it was my body that was at an angle to the other person, allowing my tilted head to face them. These adaptations evolved over time and somewhat unconsciously.
From programming, I moved into business management and eventually became CEO of country operations in a major oil and gas company. I took early retirement and sailed around the world with my husband in a 42-foot yacht, navigating from paper charts and small screen electronics. I now work in research in a University.
Many challenges There have been many challenges beyond the boxes on forms. My peripheral vision is blurred. This affects my confidence when driving and lights at night are scary. Combined with rain, I change my travel plans. Going down stairs and escalators requires some concentration to know where the edge of a step is. That said, I have climbed many mountains (literally) and I hold handrails or walls to maintain balance and perspective.
Entering a digital world As the world went digital, I angled my screen rather than my head. Phone texting only became possible with smartphones and the option of enlarging the display characters. Filling in printed forms and signing within a lined box remain frustrating to this day. To read a long array of numbers, such as telephone or IBAN, I have to move my finger over the preceding numbers to the next in line, in order to see each digit clearly.
My general eyesight has deteriorated and I now wear glasses. I can’t have contact lenses due to the wobble and apparently this means no form of laser surgery is possible. Small frames crowd my vision, so my choice in style of glasses is limited. Varifocals have been even more challenging and I have had to relearn my head angles and speed of movement in order to refocus.
I don’t see nystagmus as a disability I have spent 60+ years thinking this was just a funny and rather unique aspect of being me. Perhaps because I have lived out of the UK since 1988, I have only recently become aware of the Nystagmus Network and the extent of the membership. It has made me reflect on and be more conscious of my experience and adaptations. Having had no comparison or reference, I did not consider my condition an impairment or disability. No one ever told me I could not do something because of it. I wonder if my own and society’s lack of awareness during these past years meant I was not hindered in achieving my goals regardless?
Sadly, my Mother is registered blind as a result of macular degeneration. My Stepmother leads a fundraising team for Guide Dogs. Visual impairment is ever closer to home; yet I still did not consider nystagmus in this context until I started following the Network this year.
Carol, as an adult
Live life to the fullest I welcome the new knowledge and insights the Network is providing, along with support to those with the condition. In reading many of the stories and comments shared, I recognise the limitations and pressures experienced in these current times. I would encourage everyone, especially the youngsters, to understand their specific personal challenges, find appropriate support, consider the necessary adaptations as enablers and live life to the fullest.
Thank you, Carol, for sharing your story with us
If you would like to share your nystagmus story, please email us at [email protected]
Your chance to influence the direction of UK nystagmus research
NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network.
Mission Statement
NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups we work to raise the profile of nystagmus and attract research funding. By collaborating and sharing data and ideas we aim to achieve the best possible clinical outcomes for patients, including the development of a Nystagmus Care Pathway.
As work on the Nystagmus Care Pathway is now complete, pending approval by the Royal College of Ophthalmologists, NUKE plans to work on a new project. We would like to hear your views on where to focus our energies.
To voice your priorities for nystagmus research in the UK for the next two years, please take part in this short survey. Thank you.
A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus.
The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are:
Lucy
Mum to Maisie and partner to Myles, we’re sure it’s no surprise to them that Lucy has been nominated as a Nystagmus Champion for her baking skills. We’re no Paul or Prue, but we know that there must be something very special about Lucy’s cakes and about Lucy, herself. Earlier this year, Lucy took on a 12-hour bake-a-thon, making everything from Lemon Drizzle cake to chocolate brownies. She did get Maisie’s nursery to join in, too, but baked most of the cakes herself, making full use of her two ovens at home. She raised a lot of awareness and a phenomenal £2,000. Well done, Lucy! And thank you!
Khalil
Back in June we took a call from an enthusiastic young man. He said he’d like to take part in Nystagmus Awareness Day and could we please send him some T-shirts. This was Khalil. As we chatted, he revealed that he had nystagmus himself. He also shared that he was the Assistant Manager of the Leicester branch of Specsavers. What a tremendous achievement! Khalil has been nominated as a Nystagmus Champion of 2022 for persuading his entire staff team to wear Nystagmus Network T-shirts and wristbands on Nystagmus Awareness Day and sharing the photos across the local press and social media. Thank you, Khalil. We are so grateful for your support.
Tracy
2022 was not the first time that Tracy chose to do something energetic for the nystagmus cause. But this time it was particularly strenuous. She took part in the full Ironman. If you’re not sure what that is, it’s a 2.4 mile swim, followed by a 112 mile bike ride, followed by a 26.2 mile run. Yes, that’s right. That last bit is a marathon! Despite picking up a knee injury in training, Tracy completed the challenge and raised £1,500 in the process, making her family and especially her son, Alfie, very proud indeed. Thank you, Tracy for all the energy. You are a Nystagmus Champion.
Charlie
7-year-old Charlie has nystagmus. He’s also a huge football fan and one to watch for the future, we think. When his cub team were looking for sponsorship for their kit, young Charlie decided to write to his Mum’s bank. They would have plenty of money! Luke, the bank manager took part in a triathlon and raised the sum needed, but then he asked Charlie to nominate a charity whose logo should appear on the kit. And this is how the boys got their Nystagmus Network sports tops. And don’t they look smart! We’re not sure how the tops have helped with goal scoring, but we’re sure that Charlie has a stellar career ahead of him. Congratulations, Charlie.
Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes
When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry.
Now, aged 21, and assistant manager at Specsavers Leicester, Khalil wants to raise awareness of nystagmus, the condition he has lived with for most of his life, alongside building a career in optics.
On Nystagmus Awareness Day 2022, Khalil and his entire staff team donned Nystagmus Network T-shirts and wristbands to raise awareness of nystagmus and support the work of the charity.
For his tremendous support, raising awareness of nystagmus and to honour his career success, the Nystagmus Network has nominated Khalil one of the ‘nystagmus champions’ of 2022. Join us to celebrate Khalil and all the nystagmus champions of 2022 at Open Day.
Khalil’s inspiring story has been told in local press articles in print and online.
