Nystagmus researcher and clinician from the Royal Eye Infirmary, Plymouth, Professor Chris Harris, will be talking about the causes, potential treatment and his further research into Acquired Nystagmus and Oscillopsia at the Nystagmus Network virtual Open Day 2020.
You can hear this and all the other presentations by registering now for the Nystagmus Network virtual Open Day 2020.
Can I tell you about Nystagmus? is a guide for friends, family and professionals by Nadine Neckles (illustrated By Vikas Upadhyay).
Sue from the Nystagmus Network talks about Nadine’s book here.
In this friendly guide, a girl called Amber explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help. She invites readers to learn the causes and symptoms, to help others understand the condition and help increase the self-esteem and confidence of those who have it. This accessible guide for children aged 7+ is an excellent starting point for parents, teachers and other professionals working with children with nystagmus. It includes a practical checklist of easy adaptations to make school or home environments easier and more enjoyable for children with nystagmus, as well as a helpful list of recommended resources for additional support.
The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition.
We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats or stay in touch by email until it’s safe for us all to meet up face-to-face again.
The Nystagmus Network plans to set up a range of regional and local nystagmus networks as soon as it’s safe to do so.
We already have a vibrant local group in the Greater Manchester area.
If you’d like to join a local nystagmus network or volunteer to run one in your area, please contact us today.
High street optical staff need to understand the complexities of nystagmus, how to test the sight and how to dispense any corrective glasses or contact lenses.
Due to the cancellation of so many routine eye clinic appointments during the current pandemic and the signing off of non-urgent cases, such as patients diagnosed with nystagmus, local opticians are now seeing increasing numbers of these patients in their practices.
Following the success of 3 webinars the charity organised and hosted in May 2020, attended by a total of over 900 dispensing opticians and optometrists, the Nystagmus Network is planning to host a further 2 webinars on nystagmus for eye-care professionals.
But we need funding to do this.
That’s why we’re fundraising with The Good Exchange. Please visit our campaign page and share it with your networks.
THANK YOU
Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed.
Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have nystagmus it can be challenging to judge distances.
That’s why RNIB have worked with the Cabinet Office to develop a series of optional Please give me space badges you can print, wear or show on your phone. The idea is that people will immediately understand that you need space, but may find it difficult to maintain, so will help you by keeping their distance.
Find the badges on the government website here.
Similarly, the new Distance Aware initiative is also welcome news. Using a series of distance ‘shields’, it enables individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme has recently been endorsed by the Department of Health and Social Care to promote the ongoing need for distancing. Also supported by the Welsh Government, the badge and poster templates are available to download here.
The Nystagmus Network hopes that the two schemes will help people living with nystagmus and low vision to stay safe, maintain their quality of life and continue to enjoy their independence.
You’re warmly invited to join us for one or more of our upcoming forums in the run up to Open Day 2020.
Because we know that one of the ‘best bits’ of Open Day is meeting up with others, we’re holding a series of online forums to help you do just that.
In August and September, we’ll be hosting some great opportunities for you to network and chat with other people living with nystagmus or other parents.
| Parents’ Forum A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to network, chat and ask all your burning questions. Thursday 13 August at 7.30pm |
| Adults’ Forum A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with nystagmus. Thursday 27 August at 6pm |
| Acquired Nystagmus Group – meet the expert A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to hear an expert speak about acquired nystagmus and ask questions. Date and Time to be confirmed |
Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination towards athletes classified B4 in international blind sports. The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee).
Classification currently sees many athletes and sports men, women and young people with nystagmus classified as B4. This means that, whilst their sight is sufficiently impaired to prevent them competing fairly alongside fully sighted people, within the current regulations, they are unable to represent their country in any sport at international level.
We would argue that the B4 classification does not fully recognise the variability of vision or the impact of glare on people with nystagmus and ocular albinism. For this reason the letter includes the following:
“A frustration further compounded by the fact that visually impaired athletes have varying levels of functional vision, and the difference from B3 to B4 is, minimal in some conditions, and could easily be affected by external factors, such as tiredness, light and interpretation of visual cues.”
B4 International Blind Sports have also set up a petition for anyone to sign who wishes to have blind sports classification re-examined.
Here is the latest update from the DVLA regarding driving licence services.
As a result of the impact of the COVID-19 pandemic, Ministers at the Department for Transport have agreed to adopt a temporary measure to assist drivers in complying with the driving licence renewal requirements.
To make it easier for drivers who need to renew their photocard licence or their entitlement to drive, where their licence expires between 1 February 2020 and 31 August 2020, they will now have a 7-month extension from the date of expiry.
This means that they will not need to renew their photocard or entitlement to drive until 7 months after the original expiry date. The extension is automatic, so drivers do not need to take any action. The driver record will show the current expiry date on the driving licence, the record will be updated once an application is made to renew the licence at the end of the extension period, when a renewal reminder form will be sent.
If a driver has already applied online to renew their photocard this will be processed as normal.
This extension applies to all full licence renewal applications including short period medical licence and lorry and/or bus renewals. It does not apply to provisional driving licences or where the licence needs to be renewed following a disqualification.
By law, all drivers must ensure that they always meet the medical standards for fitness to drive when driving.
Information about driving with a medical condition is available on GOV.UK . If a driver has already applied to DVLA to renew their photocard or their entitlement, they can continue to drive while DVLA is considering their application, providing they have not been told by their doctor or optician that they should not drive.
Drivers with nystagmus do not need to notify DVLA of their condition, but they must be able to pass the DVLA sight test. For more information on nystagmus and driving, please download our guide here.
If you have any questions about driving and nystagmus which you would like us to pass on to the DVLA, please contact us.
Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.
In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.
The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.
We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.
People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition.
The team at the University of Sheffield behind the Nystagmus Information Pack would like your help to review the pack and improve care and information services for nystagmus patients.
You can take part by completing an online questionnaire from the safety of your own home.
