Living With Aniridia

[@RammenDanAlsJeKan]

Thank you so much! Our six weeks old daughter got diagnosed with Aniridia last week and this really lifted my spirits!! Thanks again and all the best to you

[@WellEyeNever]

+RammenDanAlsJeKan Hi! I'm so glad you found this useful, thank you! Aniridia won't stop your daughter living her life, with the right support she'll be fine. Best wishes to you and her! :)

[@dianachavez3200]

Thank you for giving me a glimpse of how your life is like. My 1 yr old daughter has this, she is a very happy and active baby but I worry thinking thinking about her future but hearing you talk about this and see how you can still lead a happy life really really helps. As her mom that is ALL I want for her. God Bless and thank you again!

[@WellEyeNever]

Thank you Diana, I'm glad you found it helpful. If you look up the Aniridia Day group on Facebook, you'll find loads of success stories from people with aniridia that we brought together in a campaign last week. There's an Aniridic Family support group on Facebook too, as well as groups like Aniridia Network UK and similar ones in other countries. So there's lots of support out there, make use of it. Ultimately Your daughter will be fine, it just takes a little time for her and you to get used to it and adapt accordingly. Best wishes. :)

[@Yanice_M01]

I have aniridia aswell it's tough I get bullied Sts but I'm happy and thankful because I have the ability to see

[@WellEyeNever]

Good approach, yes. A positive attitude will get you much further in life than the selfish attitude of the bullies, which won't get them anywhere. So stay strong, and don't be afraid to seek out whatever support you need when necessary. :)

[@DJTe3n]

You are loved

[@Yanice_M01]

@@DJTe3n thank you so much 💜

[@Yanice_M01]

@@WellEyeNever thank you so much for your reply 😊

[@howiseethingsilove9098]

It's great to hear how you see with your low vision. Thanks for sharing!

[@WellEyeNever]

You're welcome, I'm glad you enjoyed it. Thanks for commenting! :)

[@chadhumbert1791]

Thanks Well Eye Never! My 10 month old has aniridia and I'm trying to learn the struggles our family will encounter.

[@WellEyeNever]

Thanks, glad you found it useful! Of course there will be struggles along the way, and it can take time, effort and patience to adjust to things. But the condition certainly doesn't stop you living a full and happy life, especially with all the help and support that's available these days. So don't lose hope. As your child grows up and adapts, their confidence will grow too. They'll be fine. :)

[@johnnyg.2245]

Ever since I started going to school 8 years agoI didn’t know how much of an impact my eye condition would have on my life and education. I myself thought of the idea to present to my classmates and teachers to know what is “wrong” with my eyes, so they won’t ask any unnecessary questions. In all my years of going to school I have never been bullied, but I do expect going into high school I will be bullied.

[@WellEyeNever]

Yes, it's surprising what an impact it can have. That was a good idea to tell your classmates about it, and it demonstrates you had the confidence, ability and foresight (no pun intended) to do so, which a lot of disabled children don't, myself included at that age. So you're in good stead for high school, there's no guarantee you'll be bullied there, and even if it does happen you're well placed to deal with it.

[@ezragoldman8323]

I have aniridia to and feel the same way about not missing out. I also live in canada and apparently they were testing some form of treatment in Vancouver. I was thinking of volunteering but then I found out that it was not my type of aniridia but maybe it relates to you so maybe you should look into it.

[@Mikolas649]

My doctor in new west. Sent me to Dr. In calgary in aug.2012 to get anirida 50c implant.After 4500$ later i got little if any relief.Very disappointed,furthermore Dr. GIMBEL never so much as ever contacted me to check on my result.go figure.its a business for these Doctors.Dont trust them!!!!

[@joezylak6338]

Ezra goldman wow not sure if you will see this because this comment is a year old. but just find it crazy that you commented about the testing in vancouver and i am one of those vancouver patients haha

[@dancing12a]

It’s nice to see other people with aniridia explain what it’s like. I also have aniridia I am from the United States. It’s pretty rare I’ve only heard of 2 others in my state having this. Do you have nystagmus, and other things that go along with it as well? Also have you tried any surgeries? I’ve had this since birth as well.

[@WellEyeNever]

Thanks Amanda, I'm glad you liked it. I do have nystagmus as well, and have a separate video all about it: kzbin.info/www/bejne/lYWWZWqmrd14nsU I don't have anything else that comes with it yet, but there's a good chance I may get affected by things like cataracts as time goes on. I haven't tried any surgeries, because there's nothing that will cure it. Any surgery I do have would be to stop things getting worse, or at least delay it.

[@ML-gg5ij]

Thanks for sharing, very interesting to learn understand how you experience aniridia and the solutions you come up with. Would you mind sharing what visual acuity you have? thanks!

[@WellEyeNever]

Thanks, glad you found it interesting. :) My visual acuity's 6/60.

[@ML-gg5ij]

@@WellEyeNever thanks for the quick reply! Did your visual acuity change over the years or is it relatively stable? Does 6/60 mean that you are legally blind? Is there specific support available to you? Do you meet people with similar conditions?

[@WellEyeNever]

It's remained stable over the years so far. It will likely start to deteriorate at some point though. My sight loss isn't severe, so I'm registered partially sighted, not blind. There is plenty of support available, from health providers to charity organisations, and other people that share my conditions. I've met lots of people with my conditions, such as at conferences and meetups run by organisations that support people with my conditions, and other general social gatherings and events for visually impaired people, plus I knew some people with my conditions in my school days as well. I also have a lot of connections with people on social media as well. So I don't feel lonely about it.

[@ML-gg5ij]

@@WellEyeNever That's great, I'm glad that there is plenty of support for you and a community to connect to. Do you know what causes the loss in visual acuity? From my understanding, the main purpose of the iris is to block out light when it's too bright. But that can be done by sunglasses too. So, with sunglasses on I'd expect people with aniridia to have otherwise normal vision. I read that aniridia often affects other parts of the eye too, so I assume this is the reason? Sorry for bombarding you with all these questions..

[@WellEyeNever]

That's alright. Yes, aniridia affects other parts of the eye too, the iris is just the main impact of it. And I also have nystagmus as a side effect of the condition, which is common among people with aniridia. It basically comes down to a faulty gene that stopped the eye developing correctly when I was born.

[@mrsteresa1999]

Awesome job explaining Aniridia. Can i share with one of my videos? I have the whole gamet of conditions related to Aniridia.

[@WellEyeNever]

Thanks Teresa, I'm glad you could relate to it. And sure, you're very welcome to share it. :)

[@manaka-chan8907]

I've got aniridia but I've got a rarer type that has no cause (I live in the U.K. And there is only one other with the same type of aniridia as I) plus what else tops it off is I also have nystagmus,

[@WellEyeNever]

There are a lot of variations among people with aniridia, yeah - as with any eye condition, it affects each person differently. So it is interesting to hear about the differences, especially as yours really is extremely rare! Thanks for commenting! :)

[@yourstruely7005]

I also have aniridia

[@jballs5434]

I know it's difficult to live with, but at least it looks cool. :P Thanks for the informative video. :)

[@WellEyeNever]

Jordan Dude Cheers Jordan, glad you enjoyed it! 😎

[@michaelpop0]

I have aniridia eye is cool I like it because of the color black and I can freak people out when I am mad But for my self I am not happy with life it self I was depressed most of my life Because of aniridia

[@manaka-chan8907]

It's also like if we do a what colour eyes do you have I'm like well ... I don't have any

[@rosamarta9078]

.. nah eye colour is overrated...

[@ecologist_to_be]

I have a lot of issues with bright lights and white backgrounds etc. I'm hoping my new optician will help as the big glasses companies are useless won't do anything to improve my quality of life as I'm too complex lol

[@WellEyeNever]

Yeah, the mainstream glasses companies probably aren't used to anybody out of the norm with relatively rare conditions. I hope you have better luck with the optician. :)

[@madeinturkiye_tr]

@@WellEyeNever may i know what kind of glasses you feel the best in your condition? Any particular brand? Color? I really appreciate your effort in explaining living with aniridia. My heart broken in pieces when knowing my baby has aniridia. I collect and arrange it back piece by piece. But always broken again and again. If there is a way, i would give my eyes for him.

[@WellEyeNever]

@@madeinturkiye_tr Firstly, your feeling are totally understandable. But I can assure you that your son will be absolutely fine. People with visual impairments and other disabilities are very capable of living full, happy and successful lives, and there are many disabled people out there doing exactly that, more than ever before these days in fact. What matters is that your son gets the right support and encouragement to enjoy themselves and be successful. That may seem hard to believe at first, and it is going to be a learning curve for you all as a family, of course. It's not always an easy journey, but a huge amount can and will change over time, just as I'm sure it has in your own life. So don't worry about the future, focus on the here and now, by helping your son to enjoy their life now. The happier and more supported they are now, the better the future they'll have, as they'll feel more confident about themselves and be more able to adapt to new situations. You'll be amazed what can change in 1 year, 2 years, 5 years, 10 years, etc. In answer to your specific question, I don't use the glasses in this video any more, because I have since found a different pair that I prefer, after a friend recommended them. They are green tinted glasses that are actually designed for migraine sufferers, but they work very well in reducing glare for me. I got them from the RNIB shop here in the UK at the link below: shop.rnib.org.uk/mobility/eyeshields-and-sunglasses/migraines/19-migralens-xwrap-wraparound-eyeshields.html

[@madeinturkiye_tr]

@@WellEyeNever 💙 thanks! Thats very soothing.. Warm regards 💙

[@MyYouTube2022]

Have you ever tries pinhole eyewear? I have defects on iris from the pigment falling out of iris (so called pygmentary syndrome) and would like to try that too to prevent glaring. Thanks in advance for any information about that.

[@WellEyeNever]

I haven't, no, they've never been recommended to me. The green tinted glasses I have now work very well for my needs.

[@MyYouTube2022]

@@WellEyeNever I have tries yellow tinted an they work so so! Will by all means let you know as soon as I have received my pair of pinhole eyewaar. Ok?

[@WellEyeNever]

Sure, let me know you get on. 🙂

[@MyYouTube2022]

@@WellEyeNever I returned them! Were working quite good for my myopia, however inside too dark and unusable in the glaring sun where I wanted to try them instead of my sun glasses. The holes are not made through the material (only a layer of foil is pinholed and fused to a thin layer of plastic on both sides) and the sun reflexing there destroys the picture completely.

[@OliverKellow]

do you wear the glasses inside?

[@WellEyeNever]

Not normally, no. There can be the odd occasion where the lighting inside a place is particularly glaring, or if my eyes are more sensitive than usual, where it would be useful to wear them. But such moments are very rare.

[@TwojeZmartwienie]

Could you tell me how well you see in almost complete darkness?

[@WellEyeNever]

I'm blind in that situation. At best I might be able to make out very faint silhouettes of things if there's a little bit of light behind them, and even then it would only be after I've taken a few moments to adjust, but that's as good as it gets. So basically I can't see anything, even things that are directly in front of me. So when I'm out on my own I make sure I stick to areas with lighting to be safe.

[@emilyblossom5643]

Fellow anirida patient here. In these scenarios, we just adapt! It is annoying when someone has just turned the lights on or off, it takes forever to adjust, or I don’t adjust at all. My strategy for low light is usually a phone flashlight, or I have a hand on a wall/ friend to guide me to where I’m going, as I see almost nothing, only silhouettes if there is some lighting. In my own house, with no obstacles, muscle memory guides me in the dark to where I need to go, and unfamiliar low light situations where I have to move around are rare

[@rasverixxyleighraq1509]

It must be harder for parents to spot Aniridia in black infants, they'd have wait for other vision issues to become apparent unless congenital Cataracts accompanied them

[@rosamarta9078]

dont understand why would be harder in black babies..

[@rasverixxyleighraq1509]

Because you can't see the iris on a black eye

[@bothwellmundondo890]

True. I'm black and my 4 year old child has aniridia, it was diagnosed at 3

[@roshila.h2630]

Have you ever tried any surgeries ??

[@WellEyeNever]

No, I've never needed any surgery so far. There's no surgery that can cure my conditions.

[@rosamarta9078]

why aniridia get linked with kidney problems?

[@WellEyeNever]

Because of the faulty gene that causes aniridia, called PAX6. Like any gene, PAX6 affects multiple parts of the body, not just the eyes. So when it's corrupted or missing, it can have all sorts of effects, which varies from person to person.

[@h0neybadger618]

I have the same thing I don’t want to get Glock coma

[@rosamarta9078]

pistol whipped in the head?