For Immediate Release
Campaigners on behalf of people in Ireland living with a very rare eye condition have welcomed the holding of a worldwide designated day to highlight it.
The first ever International Aniridia Day took place yesterday (21st June 2017) to focus attention on the rare congenital eye condition which causes incomplete formation of the iris. This usually affects both eyes and can cause loss of vision.
It is thought that no more than forty people in Ireland are affected by the condition.
There is no single cause for Aniridia which falls roughly into two groups, one is hereditary and the other of unknown origin. If the condition is genetic several individuals in successive generations will be affected.
Babies with Aniridia will need to be carefully monitored and examined to ensure no additional problems develop.
Eleanor Burke, the Irish Representative for Aniridia Network Ireland, who herself was born with the condition says “We have all worked so hard to bring this day to fruition. I have lived with this condition all my life and finally people are becoming aware of it and this is so important. Knowledge is key. Research into this condition is crucially important as people living with Aniridia are constantly living under the threat of complications which further decrease their vision, leading possibly to blindness”.
The Aniridia Network Ireland was launched just this year at the headquarters of the National Council for the Blind of Ireland.
Chris White CEO of NCBI says “An international day to mark Aniridia is a hugely significant step in the right direction. This eye condition is highly rare and that brings its own complexities and difficulties. Research into Aniridia is ongoing which, coupled with this concentrated worldwide focus on the condition, may lead to a breakthrough”.
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 51,718 people with impaired vision in Ireland and this number is rising. (according to Census 2011).
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 91 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.
For further information contact Sally McEllistrim NCBI 01 8821975/ 086 9471600