Living with nystagmus - Phil's story

[@ashleynavarro9877]

My daughter is 7 years old and has to wear glasses since she was 6 months old. She couldnt see us or colors until she got her glasses she still struggled but when she saw me for the 1st time she was nothing but smiles because she was able to put a face to the voice its so hard going through this.

[@samaasaleh2864]

My son has nystagmus due to ocular albinism also , I wish you both the best

[@MrMungin81]

Such a brave soul

[@joaoermensongomes]

great video Phil's

[@Dragonflyy826]

Very informative Phil. If I may, And I realize your comment is a little old, so you may not even see my questions, but I was just wondering, can this eye condition not be surgically corrected? And, I assume there's no "one cure fits all" by the way you explained nystagmus, but sounds as if it's a very treatable condition, and you've certainly found the best strategies that make living life easier for you. That's awesome. Is there any certain cause or reason that brings this condition on? Just asking for someone I know who may be suffering from this, after a TBI. Thank You Phil, and Many Blessings are being sent your way! 🙏✝️💙🙏✝️ 💜

[@nicholaswheeler507]

I have nystagmus and ocular albinism too. You are not alone

[@joaoermensongomes]

Happy new year! great video!

[@suzaneltahir5362]

Thank you very much u are hero🌹🌹🌹🌹❤️❤️❤️❤️❤️

[@Will-dg8re]

I have ocular albinism and have the same problems

[@rnibuk]

If you feel you might need some support, you can get in touch with us on 0303 123 9999 or at [e-mail].

[@dhirenmainali6276]

Is it painful ?

[@joaoermensongomes]

hi Phil!

[@cazl1299]

is there not a surgery to correct this like there is for strabismus?

[@rnibuk]

Hi Caz, please get in touch with our Sight Loss Advice Service for more information on this on 03031239999 or at [e-mail].

[@srilekhamammu1664]

my son eyes nystagmus but didn't see anyone. but ur see all things, how

[@loiteringgypsy8639]

How is your son now?

[@thatcreepyxmastreeinyourat8950]

Sounds like nystagmus ranges from completely blind to no vision loss at all.

[@ammimilya]

This man is so cute he needs to be married

[@curiouslyme524]

😊!

[@jjj2619]

Worst thing with Nystagmus is that you look straight at a person but they think you're looking somewhere else, this is very difficult for communicating with people because eye contact in communication is considered respectful but with Nystagmus it's hard to make your eyeballs look straight.

[@archenemyfan1]

Thank you for your video and the information. My 8 year old son was recently diagnosed with nystagmus and I'm looking for information. I really appreciate your video and story.

[@rnibuk]

Hi, really glad you enjoyed the video! We can absolutely support your son - please give us an email at [e-mail]. Or call us on 0303123999 and select option '3' to speak to one of our sight loss advisors Really hope this helps.

[@okidoki3201]

Chandler marrs b1

[@alexschmidt2895]

anyone wanna see a guy with nystagmus I have it and I make videos

[@adaakdeniz6033]

thank you for sharing your story Phil 🙏🏽

[@marklittle6408]

Thanks Phil. I also have ocular albinism. My story is so similar to what you relate. Thank you so much for helping me to explain to people how I experience the world. Over years I have found ways to hide how my condition affects my daily life, which with reflection has led me into conflict in itself.

[@rnibuk]

Thank you for sharing your thoughts and your story, Mark :)

[@melody_1990]

Hello! guys... I have the same eye situation since birth and it is very sad and frustrating. And can make me so depress sometimes :( Does anyone here know if there is any surgery or treatment of this kind of eye problem???

[@jaderodrigues5987]

I have this condition and I live in Australia. I’m thinking about having the surgery. Has anyone had it.

[@warchil]

Jade Rodrigues I had it about 5 years ago and truly it didn’t make any difference at all except for purely cosmetic

[@brandontucker1181]

Im 14 Hade it when i was born had 3 eye Surgeries Its not this bad I can see fair but not to fair im jest woundring if i can drive

[@jaderodrigues5987]

Brandon Tucker I know at 14 my eyes were not good enough to drive but my nystagmus has slowed down enough for me to drive - that can happen- but it’s still there and annoys me more when I’m reading.

[@alexschmidt2895]

I have it as well I'm leagally blind in my left eye

[@alexschmidt2895]

yeah eyeglasses didn't work for me!

[@Davieis]

Nice upload! I have a similar although neurological condition that affects my vision. This helps me feel better about it.

[@christophersmith2696]

My daughter is almost 3 and she has nystagmus to the same degree as the person in this video. When she was first born we thought she would be blind but as she has grown it is very obvious that she can see but we are not sure to what degree. I was happy to hear this persons pov because there is still very much my wife and I do not know.

[@Corina-dq2my]

I might have this condition. I hopefully will see the eye doctor soon. It happened suddenly. Out of nowhere.

[@Opssum]

Is this what I look like

[@helenhoward5346]

I feel fortunate. My irises just rapidly oscillate, particularly my left eye although my right is still affected. It's like my vision is rapidly shaky.. I used to get asked about it ALL the time. Whenever I get pulled over, I have to explain to law enforcement I have congenital nystagmus or they suspect I'm intoxicated. I hate glasses, can't stand them, so they're usually on my head vs my face unless I go out. But now I'm back on toric contacts after a 6 year hiatus (after wearing contacts for over a decade). Unfortunately Medicaid refuses to cover contacts, only the bottom barrel glasses lenses. As a child and adolescent, it impacted me a lot more negatively. I was really concerned that they wouldn't permit me to have a driver's license bc it is hard to accurately measure my corrected vision and it's like ... I don't need to be able to read random letters or weird symbols when I drive. I usually know where I'm going, very familiar area, or I thoroughly research my destination on maps or just use GPS.. My best corrected vision is like 20/60 or something. Now as a 33yo, I don't get much crap about it anymore. I still feel socially awkward at times with my null point or nystagmus, especially when I worked in the public sector, people unnecessarily bring it up and I'm like "and...?". When I'm stressed or sleep deprived, it's more noticeable. But fortunately I can get by in the "sighted" world thanks to modern optometry. Without corrective lenses I'm legally blind, things are so fuzzed out that it's hard to discern any detail unless I'm right in front of it. Unfortunately, the peculiarities of CN aren't known in the general population thus it can be really challenging to advocate for myself given the limitations of it. I wish Medicaid would cover my contacts, for instance, as it's not a personal preference over glasses, but the only adequate intervention to correct CN.

[@joaoermensongomes]

great video!

[@HeyThisIsRo]

Smartphones help so much with my visual impairment.

[@joaoermensongomes]

Em que o nystagmus te atrapalha,por exemplo?? Thanks

[@popculturevegan]

Great video.

[@ВикторияДыкина-т8р]

Pop Culture Vegan

[@ВикторияДыкина-т8р]

OK Google

[@futurelight3819]

Hey can I ask what do you do?

[@timurhaysiyetsiz5816]

i wonder is it risky? people can answer me who had surgery eperience, i thinking having the surgery too

[@rnibuk]

Hi Timur, could you let us know a bit more about the surgery you're referring to so we can help?

[@timurhaysiyetsiz5816]

@@rnibuk i asked it for all nistagmus surgeries, while i looked at comments about nistagmus surgery i saw some people talking about their negative experience, namely any surgery experience can help me

[@surlywithfabshoes]

This is super informative! Is the eye turn part of the nystagmus or is it a separate condition?

[@charlesbarnett8521]

i believe a separate condition

[@sofiakhan237]

The eye turn is called a squint extropia. It's a separate condition but it's also linked to nystagmus. I know that because I have exactly the condition.

[@sofiakhan237]

@DEV of course any time I was born with the condition

[@MarkoKolaj]

Can you normaly pass the medical examinatin for drivers licence?

[@rnibuk]

It depends on your particular level of sight - we'd suggest speaking to your ophthalmologist.

[@iadorenewyork1]

There must be a surgical solution for the right eye -- no?

[@royalhybrid4524]

I'm not sure that surgery would even be possible due to all the movement unfortunately

[@mollysmum07]

Yes eye surgery will fix it. I have severe nystagmus and I had my left eye done

[@royalhybrid4524]

@@mollysmum07 Wow! I really didn't think such a thing would be possible yet... Noice