The second annual Aniridia Day takes place today (21st June). This day aims to improve understanding of the rare genetic eye condition aniridia.
Aniridia is a disease, present from birth that causes lack of irises (the colour) in the eyes. Without the iris to block out bright lights, people with aniridia find glare and sunshine debilitating, even painful. Aniridia is rare, affecting only 1 in 47,000 people.
Cork Native Sinéad Kane entered the Guinness Book of Records for being the first visually-impaired runner to complete seven marathons, over seven days on seven continents. Sinead has aniridia, she says “Light is the most difficult element of having aniridia, especially on glary day. It can make my eyes sore and blurry which can have an impact on my day. I always have to plan ahead and be organised to ensure I have sunglasses in my handbag at all times.”
Sinead welcomes Aniridia Day and its benefits, “Aniridia Day creates awareness of the condition. It will make people more aware and provide education on the condition, more education leads to solutions. We are always hoping for solutions and research.” Sinead highlights the important of Aniridia Day for parents of children with the condition, “Parents of children with aniridia can learn and receive advice from the day through the various online webinars which take place. For example, to ensure to always carry and hat and sunglasses and not use the flash on a camera or phone when taking photos, in many cases children can’t articulate how these elements are affecting them.”
Sinead is looking forward to the webinars throughout Aniridia Day, she says, “It is an opportunity to learn from other people with the condition and to hear about their experiences”. People around the world will give live talks about aniridia, the streams can be found on aniridiaday.org.
People with Aniridia can get involved on social media also by taking a photo or video, writing a description of what they can see and sharing it on Twitter, Facebook, and Instagram so people can see the difference between the two using #AniridiaSight.
For more information contact: Róisín Maxwell firstname.lastname@example.org / 012710127
Notes to Editors
NCBI is the national charity working for the rising number of people affected by sight loss in Ireland.
The majority of people using NCBI services have some remaining vision.
There are currently 54,810 people with impaired vision in Ireland and this number is rising. (According to Census 2016)
As a charity, NCBI must raise €3 million annually to ensure that we can continue to offer essential services to people who are blind or vision impaired. We do this through our fundraising events and our network of 100 charity shops nationwide.
The majority of people we work with have some remaining vision. Our aim is to help them use that vision to read, use technology, get around independently or to manage with the everyday tasks we all take for granted, like cooking and shopping.