This #NystagmusAwarenessDay, The Nystagmus Network Charity has asked supporters to ‘Step Up For Nystagmus’, in order to raise awareness of the importance of VI-friendly stairs.
At least 1 in 1,000 people in the UK have the visual impairment nystagmus. 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. The condition has 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.
Nystagmus Network Information Support Officer Hanni Heather, who has congenital nystagmus herself, said: “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.”
Nystagmus Network trustees gathered for their quarterly meeting. (L-R): Karen Chu, Kathryn Swanston, Vicky Pitman, Tim Cuffeford, Claire Brinn, Vivien Jones, Harshal Kubavat and Peter Greenwood.
‘Step Up For Nystagmus’ aims to bring awareness to the symptoms of nystagmus and the importance of VI-friendly stairs and steps to the entire visual impairment community.
Tim Cuddeford, Chair of Trustees of the Nystagmus Network, added: "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. For more information on the charity or to donate online, please visit www.nystagmus network.co.uk