Let’s banish the winter blues!
Please add 7pm on Thursday 11 January to your calendar and join us for the Great Winter ‘nystagmus’ Get Together, inspired by the Jo Cox Foundation, where we will bring together online parents and carers as well as adults living with congenital or acquired nystagmus for conversation, a quiz and lots more.
Email us to be sure of receiving the Zoom link.
We look forward to having you with us then.
This event is the first of our Ruby Year celebrations
You are invited to participate in a research study titled “Understanding the Experiences of Individuals with Eye Movement Disorders.” This study aims to explore the lived experiences, challenges, and perspectives of individuals living with eye movement disorders.
The Principal Investigators are Dr. Brian Le Lay CUNY School of Professional Studies, City University of New York and Dr. William Keith, University of Wisconsin-Milwaukee
By sharing your experiences, you can contribute valuable insights that may help improve awareness, treatment options, and overall quality of life for individuals living with these conditions.
If you agree to participate, you will be asked to complete an initial online survey that will ask you about your background, vision, and general experiences related to your eye movement disorder.
Are you aged between 16 and 25?
Have you accessed UK-based eye clinic and low vision services as a child or young adult?
If so, a team at the University of Sheffield would like to invite you to take part in a research project.
They want to understand the impact of paediatric low vision clinical services from the patient’s point of
view. You can talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.
Peter’s nystagmus story comes in the form of a poem.
Thank you for sharing, Peter
And the boy inside me still cries
Something is wrong with my eyes.
At birth the angels left a rare mark,
and the boy inside me still cries.
My parents searched for whys.
Is he blind? Will his world be dark?
Something is wrong with my eyes.
There’s no cure, the doctors advise,
his life will follow a difficult arc,
and the boy inside me still cries.
Bullied and bruised, I wore a disguise,
to shield me from stares and remarks.
Something is wrong with my eyes.
I found ways to cope and improvise,
quelling the urge to end my life’s walk,
and the boy inside me still cries.
It’s been six decades now. I seldom sigh.
What I can do is my trademark.
Something is wrong with my eyes,
and the boy inside me still cries.
The Driver and Vehicle Licensing Agency (DVLA) is responsible for establishing whether a driving licence holder or applicant can meet the appropriate medical standards of fitness to drive. Medical enquiries can range from the consideration of information provided by the driver or applicant to a more detailed investigation which can include information provided by medical professionals, reports or examinations. Consideration of medical cases is necessarily thorough so that the right balance between road safety and the needs of a driver to maintain mobility is maintained.
As the volume and complexity of driving licence applications or renewals continues to increase for applicants who have one or more medical conditions, the government believes that the time is right to review the existing legal framework.
In order for DVLA to take this forward, today Monday 31 July, they have published a call for evidence on driver licensing for people with medical conditions, which can be found here:
The call for evidence sets how and why licensing decisions can be so complex for individuals with medical conditions, the roles of those involved in the process and presents the challenges that demographic and other changes poses to the current process. It explores how other countries deal with drivers with medical conditions and other situations where medical fitness is assessed. The call for evidence also considers the potential impact that technological advances may have on the future of driving and the way DVLA assesses medical fitness to drive.
The call for evidence runs until Sunday 22 October 2023. Evidence will be gathered from experts across organisations. Responses to the call for evidence will be analysed to assist with reviewing the existing legislative framework.
Download a copy of the Nystagmus Network’s digital guide to Nystagmus and Driving here
You are warmly invited to join Nystagmus Network staff and trustees for our next in person event – the big nystagmus meet up, Manchester.
We shall be at The Limelight, a fabulous community hub in Trafford, just a short tram or bus ride from Piccadilly station.
We can promise you some great guest speakers, information and advice on all aspects of living with nystagmus including local services, a Q+A session with clinicians, and, most importantly of all, the chance to meet other parents and people living with nystagmus, just like you.
For more information and secure your place, please contact us at [email protected]
This event is funded thanks to a Magic Little Grant from players of the People’s Postcode Lottery.
To help raise awareness and understanding of nystagmus, we;re sharing all your stories this Nystagmus Awareness Day.
This is Gemma’s story …
My name is Gemma and I am 38 years old. I have congenital nystagmus. I have 3 children whose vision is perfect so I know I haven’t passed it down to them.
When I was younger nystagmus wasn’t well known and I spent a lot of my childhood visiting the opticians, going to the eye hospital and being given glasses for short sightedness which made no difference. I held everything close up to see and managed school by copying off the child next to me. My hair was white and I have a very pale complexion so I think doctors thought my vision was likely to be down to albinism. I was told as my hair got darker as I got older my eyes would get better … it did not.
After starting secondary school I had to ask the teacher to read off the board what they were writing so a lot of my school work was done by memorising what they said. Every subject I took further were all practical subjects so art, drama, dance. I went to university and completed a theatre and performance degree.
I always knew I wouldn’t be able to drive so it’s never really bothered me. I’ve always got by one way or another.
At the age of 17 I was diagnosed with nystagmus and was classed as partially sighted. At the age of 30 I was then classed as severely sight impaired/blind.
I worked in schools as a learning mentor and a teaching assistant and went on to complete my PGCE to teach. Teaching wasn’t for me and I went on to secure a job as Quality of Education Manager and SENDCo for a large day nursery. I absolutely love my job.
I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment. There’s a solution to every problem.
If you’d like to share your nystagmus story to help raise awareness we would love to hear from you.
This is Isabelle’s story …
I was diagnosed with congenital nystagmus as a baby. My mum didn’t know anyone with the condition and had never heard of it, as most people haven’t. We didn’t learn that I have ocular albinism, that causes my nystagmus, until I was around 14. We discovered this through doing some tests in a hospital in London.
I wore glasses from 6 months old until I was 13, but came to the conclusion that glasses didn’t help at all.
Having nystagmus has impacted my school life significantly, but never stopped me from achieving my goals. Going to mainstream school, as most children do with nystagmus, it can be difficult navigating being “different” from other children, especially when those differences are noticeable. However, I found just being confident and proud of my visual impairment helps so much. I am now at university, which some days I didn’t think would be possible, but if you can believe it you can achieve it!
One of the biggest impacts nystagmus has had on my life so far is not being able to drive. I’m only 19, but when I turned 17 it was hard watching all my friends pass their driving tests and start driving. I felt like the only person that wasn’t allowed to drive. Over time, I realised that being the passenger has so many perks and I’m definitely not alone.
Throughout my life with nystagmus, I’ve had many people of all ages make comments or ask questions. When I was younger I would get upset when another child said something that maybe wasn’t worded very nicely. I’ve come to realise that it’s just a lack of knowledge, as nystagmus isn’t a well-known condition throughout society. It can be awkward, upsetting and triggering when someone points it out or makes a disrespectful comment, but simply describing my disability to them is always the best way to help someone understand.
Having nystagmus was my biggest insecurity through my childhood. It was quite noticeable, especially through the way I have to tilt my head to look at people. People not knowing what it is can be a struggle, as I can do things differently from others to make it easier for me with my impairment. However, I’ve grown to love it and be proud of the way I navigate life alongside it.
Being visually impaired has impacted me in even the smallest of ways that we had never thought of when I was younger. Things like going to concerts and not being able to see the performer, being unable to read the whiteboards in school, getting lost in busy places, not waving back to people on the street as I didn’t see them, the list is endless. However, I’m grateful for the things I can see and the lessons it has taught me; everything will be okay in the end. Just because I have nystagmus, doesn’t mean I can’t achieve my goals.
It has caused many obstacles and I’m sure it will cause many more, but I know that I’ll get through them with the support of my family, friends and charities such as Nystagmus Network. My eyes are beautiful and so are yours!
We are sharing your stories of nystagmus to help raise awareness of the condition.
This is Savannah’s story
Savannah’s Congenital Nystagmus was noticed by the Public Health Nurse at her 3 month check-up. She referred her to CUH Opthalmology and it was confirmed Congenital Nystagmus at around 6 months old. It never really affected her as a baby apart from not being able to see us from across the room. She would just follow our voices or her toys would have to be placed close to her. Even now she has her own little ways of making things easier for herself!
Savannah successfully completed 2 years of preschool with very few obstacles or problems and is now just finishing Junior Infants. At school Savannah has a lot of support from both her wonderful teacher and her amazing SNA, Helen. She also has a magnifier which was kindly granted to her from NCBI which makes life a lot easier as she can see the board and books and anything around the classroom from her desk just like all her friends, who are all so kind and patient and understanding with her. They don’t see her as visually impaired, they just see her as Savannah.
Back in April Savannah took part in a Para Athletics Event in the Mardyke Arena, Cork where she achieved first place in her race. She ran it completely unaided.
She is a bubbly, happy little girl who doesn’t let her visual impairment stop her from trying anything! Savannah is very open about the fact that she has Nystagmus and isn’t afraid to ask for help when she needs it.
Hospital appointments, regular eye tests, several eye infections are all normal day to day life for Savannah and she takes it all in her stride.
Thank you to everyone who has shared their story for Nystagmus Awareness Day 2023 to help people understand the condition better.
This is Hazel’s story …
I have had nystagmus my whole life associated with the childhood cataracts and related surgeries I had as a baby, but it was not until I was an adult that I learned it was a separate condition. Nystagmus is the wobble. No matter how hard I try my eyes move about on their own. This can make it difficult to maintain eye contact and sometimes people think you are being rude or are not interested because you are not looking at them when you are in conversation. Everyone is different and it is hard to know what is nystagmus and what is as a result of other eye problems. I don’t see any letters on the chart at the opticians any more and wear strong reading glasses to access large print. Assistive tech helps me keep working and I now use a long cane to help maintain my independence. Yes, some days are hard. There are things I can’t do or things that just take longer but many things I can do. So I have embraced all the opportunities in life that come my way and am grateful for supportive friends and colleagues. I am married with 2 almost grown-up kids, work part time, volunteer as a school governor and a trustee for my local sight loss charity. Two years ago I took up running and ran my first marathon in London in April.
