Step up for Nystagmus on 20 June 2022
This Nystagmus Awareness Day The Nystagmus Network Charity Asks Supporters to ‘Step Up For Nystagmus’ to Raise Awareness of the Importance of VI-friendly Stairs
On Monday 20 June, the Nystagmus Network marks Nystagmus Awareness Day by asking supporters to ‘Step Up For Nystagmus’ to raise awareness of this complex visual impairment.
London, UK Monday 20 June: – At least 1 in 1,000 people in the UK have the visual impairment nystagmus, but have you ever even heard of it? This Nystagmus Awareness Day, the Nystagmus Network is asking their supporters to ‘Step Up For Nystagmus’ to raise awareness of and funding for nystagmus by highlighting the importance of visual-impairment friendly stairs.
Characterised by uncontrollable movements of the eyes, nystagmus can affect focus, scanning, 3D perception and facial recognition. It is a lifelong condition and cannot be corrected by glasses or contact lenses. There are no long-term effective treatments, and there is no cure. There are two types: congenital nystagmus presents in the first few weeks or months of life, while acquired nystagmus can occur at any time of life and is often associated with another health condition such as stroke, multiple sclerosis, brain tumour, the effect of a drug or head injury.
While every case of nystagmus is different, for most people the effect of nystagmus on depth perception means that negotiating stairs can be a challenge. During the pandemic, many with nystagmus found that face masks further complicated depth perception, coordination and balance.
‘Step Up For Nystagmus’ brings awareness to these symptoms of nystagmus and the importance of VI-friendly stairs and steps to the entire visual impairment community.
Nystagmus Network Information Support Officer Hanni Heather, who has congenital nystagmus herself, says:
“Let’s show what good steps look like by taking photos when we’re out and about and saying what’s helpful to us. Good contrast, marked steps and well fitted handrails all make life that little bit easier for someone with nystagmus and help us to be confident and independent within our community. Talking about nystagmus is the best way to raise awareness of it.”
Tim Cuddeford, Chair of Trustees of the Nystagmus Network.
"We recognise Nystagmus Awareness Day because it’s so important to shine a light on this relatively unknown but prevalent condition. It’s estimated that 1 in 1,000 people in the UK have Nystagmus and it is the most common visual impairment in school aged children. People with Nystagmus need advice and support from experts as well as awareness from the general public on adaptations and other support they might need. Nystagmus Awareness Day is about just that - bringing awareness of Nystagmus to everyone!"
The Nystagmus Network relies solely on the generosity of donors to continue supporting the nystagmus community. Do you have nystagmus or support someone who does? For more information on the charity or to donate online, please visit the Nystagmus Network website.
About the Nystagmus Network:
Founded in 1984, the Nystagmus Network is the largest representative body in the UK of people living with the form of vision impairment called nystagmus and the only charity in the UK specifically supporting the nystagmus community. Nystagmus is characterised by uncontrollable movements of the eyes. It is a lifelong condition and cannot be corrected by glasses or contact lenses. There are no long-term effective treatments, and there is no cure.The Nystagmus Network provides information and support to those living with nystagmus, raises awareness of this complex condition and funds nystagmus research.
The Nystagmus Network Step Up For Nystagmus Logo. Image shows two people walking up outdoor stone steps.