As you may know if you’ve followed me for a while, I have the rare eye condition Aniridia. It basically means I don’t have an iris in my eye, and as that would normally control the size of the pupil, it means I’m more sensitive to natural light and glare than normal people and find it harder to adjust in the dark. I also have nystagmus, which many people with aniridia also have, but I want to talk about aniridia specifically here.
I’ve written about Living With Aniridia before, and posted a video as well, so they should help to explain what it is, at least from my perspective. Plus there are links to organisations connected with Aniridia on my Disability Links page.
So this post relates to that, as it’s about the first ever Aniridia Day that is being held on Wednesday June 21. If you can share this information, or just something like the video, website, Facebook or Twitter pages I’m about to mention, in as many places as possible, it’d be very much appreciated! And please do RT the stuff I keep tweeting and sharing about it on my own Twitter feed as well.
Aniridia is a rare condition affecting just 1 in 47,000 people. And on Wednesday June 21st, we want to bring as many people as possible together, to spread a message of positivity, solidarity and support. We want show that people with aniridia are able to live happy and fulfilling lives, with a huge variety of successes, achievements and ambitions. With the right support and adaptations, all sorts of things are possible.
So, if you have aniridia yourself, or you’re a parent or relative of a child with the condition, or if you’re a professional whose work relates to aniridia, then we’d love to hear from you!
On Aniridia Day itself, the 21st of June, we want you to make a public post on social media, answering the following questions in relation to aniridia:
- What is the most unexpected or greatest success that you, or someone you know with aniridia, has achieved?
- What is your, or their, ambition for the future?
You can do this in a Facebook or Twitter post, or even better in a video, podcast or blog. Then you need to share it with us.
On Facebook, you should make your post in our public Aniridia Day group first, then you can share that post to your own timeline.
And if you know anyone else associated with aniridia, please do get them involved as well.
Much more information can be found at the following links:
- Website: https://aniridiaday.org
- Facebook: https://www.facebook.com/groups/AniridiaDay
- Twitter: https://www.twitter.com/AniridiaDay
And here is the Shining Success campaign video, which I’m very happy to say I edited for the occasion. Huge thanks to James, Katie, Galina, Liza, Elena, Yoana and Gleb for all their footage, photos, suggestions and support for the film. I couldn’t have done it without you! 🙂
Thank you for reading this and watching the video, and we hope to see you on the 21st! 🙂